First off- sorry that I haven't kept this blog up the way I intended to. My need to "chillax" has outweighed my willingness to rehash our day on the blog.
I guess the title of this blog gave away our big announcement. Tomorrow is our last day of inpatient treatment at The Marcus Center!!! Cody and I have a bit of senioritis and are "over it." We're so ready to go home!! John was here earlier this week and finished his training on self-feeding. Cole was not able to come, because he got very sick. My mom kept him for 8-10 nights in a row. I lost track. If Cole was able to come up to Marcus, we would have had some sessions where the whole family eats together. We may do some of that in outpatient therapy over the next few months. Cody's progress has been GREAT! He's drinking from a regular toddler-sized cup, but still prefers the little pink cups with the cutout. He's self-feeding himself at every meal with very little issue. At the end of last week he got extremely constipated from refusing to poop and started throwing up repeatedly at his meals. There was just no where for all that food to go, I guess! They sent us home on Friday with orders to discontinue protocol meals and allow him to eat him "preferred food" until everything was "back in order" so to speak. Cody drinks Miralax daily, but it's been difficult to get it in him, since he no longer drinks juice with dinner. I'll spare you the details of everything that went on over the weekend, but we got everything cleared out and were able to resume protocol meals. Since then he's had mostly good days. He's definitely over "food school" and is looking forward to being home and going to the beach with our family.
The plan we made earlier this week in knowing he'll be finishing up Friday is to go down to 3 meals rather than 4 during the school day. This will more closely mimic his actual schedule and intake after discharge. Knowing that Cody prefers Mommy or Daddy to feed him more than anyone, I agreed to feed two out of the three meals during the day and take my "break" during his lunch meal. Today instead of hanging out at Marcus from 9:25 when breakfast ended until 11:45 when lunch began, we went to Target, the Pet Store, Dollar Tree, and Panera. It was a nice break. We also skipped our nap and went to the playground instead. See... senioritis. The schedule won't be quite as nice tomorrow, because they are going back to 4 meals. Cody has been working on self-scooping during lunch, but that means he gets a lot fewer grams of food. He's not able to scoop quite as much as the grown-ups feeding him yet. So they decided that tomorrow he will do self-scooping during snack time and they'll lower the gram cap for lunch to accommodate how much he feeds himself at snack.
Today they brought me some paperwork to fill out for Cody's discharge. I pretty much wrote a book in the comments section of the life impact survey. The good. And the bad. Obviously our lives have been greatly affected by Cody's time here in Atlanta. Have these effects made our lives easier? No. We are so glad to see Cody eating a wider variety of food. That is the most obvious positive change. He's gained 2 lbs here and grown in height also. He's also drinking from a cup that does not have a sippy spout- another great change! But this treatment has created a whole new level of work for us as parents. We're now tied to 30-40 minute sessions multiple times a day where we must follow certain procedures and protocols to keep Cody's therapy going. He's lost the ability to eat breakfast and dinner independently as he was doing before, because he can't feed himself the protocol meals, which we are calling "school food." We've lost the ability to sit down and eat our meals at the same time as Cody and Cole, which we mostly had before treatment. Cody's teachers at school will not see any obvious change from therapy, because he will continue to eat exactly the same things during the school day that he ate before we came to therapy. We've added to our load the need to buy 16 brand specific foods, puree them according to certain recipes for each food, store them in our limited freezer and fridge space, and wash those annoying little cups every night. Cody will need 24 small containers of food each weekend and 40 throughout the week. We have to do several oral motor exercises with Cody daily to keep up his progress on learning to chew. To keep this a positive thing, we have to see this as step number one in a long process to get Cody eating like a "normal" child.
Therapy has changed my perspective on Cody's eating. As I always have, I see him as being afraid of food. Prior to treatment I thought that's all this was-- a fear of new things, a fear of new tastes, an unwillingness to change, wanting to stick with routines, etc. But now I also see that his fear comes from an inability to physically chew and eat food. If he had progressed as a "normal" baby to 4 year old, he would have naturally developed this ability. But for whatever reason he was not willing to try foods and never learned to chew them properly. I guess this is a chicken and the egg question. Did he not want to eat food, because he didn't understand how to chew? Or did he never learn to chew, because he wouldn't try foods that needed to be chewed? All the things Cody will eat do not require a great deal of chewing. They dissolve easily or are already pureed. This really struck me when I fed him corn one night that I had prepared here at the apartment. It was the first time he had corn outside of the Marcus Center and I knew the texture was much thicker than I had served him at "school." I knew I had followed the recipe, though, so I went ahead with it. That thicker texture and maybe a few extra corn hulls that didn't get strained out caused him to throw up two times until I finally took the corn out of the meal that night. He just can't handle the texture. He won't just pick up a chicken nugget and eat it, because he can't. Not right now. There is a process for learning to chew that we are going through. Once he's passed certain levels in his oral motor therapy he'll progress from pureed food to less pureed food. :) Eventually he will eat whole foods, but I do not expect that to happen within the year.
Cody's outpatient therapy will begin April 18th. He will come every other Thursday for the foreseeable future for therapy. My mom, John, and I will rotate bringing him up on Wednesday afternoons, spend the night, have therapy on Thursday, and drive home. We are hoping to stay at the Ronald McDonald House for some of our overnight stays.
I just remembered that Cody's diagnostic interview for ASD happened and I didn't update on that. John was able to be here for the appointment, which took place two floors up from feeding therapy. It lasted over an hour and mostly was just the doctor asking John and I a LOT of questions about Cody while he played. The doctor got enough information to decide that she wants to see Cody again for the next step in the diagnostic process. I mentioned to her that I feel like Cody's diagnosis might be anxiety and sensory processing disorder rather than ASD. She agreed that it very well could be that. She wants to learn more about Cody's social behavior at the next appointment. She suggested reading up on high functioning autism or Asperger's, because that's what we would be dealing with if they decide he's on the spectrum.
Tomorrow will be Cody's last day at clinic and I'm pretty sure there will be a small celebration for him at the end of the day. My parents are going to Cairo tomorrow to pick up Cole from daycare and take him to St. Simons. John will drive up to Atlanta after school and spend the night with us here tomorrow night. We will load the car as soon as we can on Saturday and drive home to Cairo. We'll unpack the car and repack for the beach. We'll leave for St. Simons from Cairo as early as possible on Sunday. I will finally see Cole!! We'll stay at St. Simons with my mom, dad, brother, and nephew until Thursday. We'll spend the rest of Spring Break in Cairo. I will hopefully get to work a couple days, so I can be prepared when school starts back next Monday. But first... I'm setting my sights on getting through tomorrow and celebrating with a big slice of red velvet cheesecake from a place called CheeseCaked that's right around the corner. My sweet reward.
Thursday, March 28, 2019
Monday, March 18, 2019
Seven or Eight
I know it's been awhile since my last post! I actually had to go back and read my last entry to remind myself what was going on last time I wrote. I have thought about writing several times, but whenever I have the free time to write, I'm more interested in taking that time to relax. I'm tired, folks.
Last week, in addition to self-feeding, Cody started working on independently drinking from a cup. Let me remind you that this looks a little different than what you might be imagining. Each sip of milk is measured with a dropper from one cup of milk into the pink cup with a cut out for your nose. Then the cup is placed in front of Cody and he picks it up and drinks it. Dr. Criado and all the other therapists who work with Cody have been amazed by his progress in self-feeding and self-drinking. I was especially shocked that he took so well to the cup, because it's unlike what he's ever done before. At home he has ONLY used a soft-spout sippy cup and has never used an open cup. I am surprised at the self-feeding, too, but at least I knew he already had practiced the skill of lifting the spoon of food to his mouth before. Dr. Criado and I have already discussed what else Cody can work on while he continues here at the Marcus Center. Chewing will be a focus as will scooping his own bites of food. Scooping would be monumental, because that would allow him to eat some of his new foods independently at school in the coming months and next year.
Cody's behavior has been not as good over the last few weeks, I'll confess. Perhaps he's tired of being here, confused, overwhelmed, etc and unable to express it. His meltdowns have gotten to where I really don't want to take him to any stores at this point. The last two times I took him anywhere, I had to surfboard carry him to the car when we were done. And just general not following my directions, listening, etc has increased. This morning when Cody got up I could tell it wasn't going to be a great day. He didn't have any real meltdowns before we left the house, but his attitude was not great. When we got to the Marcus Center, he had his first meltdown when someone ahead of us pressed the elevator button and he didn't get to. When I say meltdown, I mean that he threw himself down prostrate on the floor in the middle of the lobby. The bad mood really came to a head during our lunch session when I started training on self-feeding with him. Here is how self-feeding works. The caregiver fills the spoon with the first kind of food, places the spoon on a plate, and puts the plate in front of Cody. He has five seconds to pick up the spoon and take a bite. If he does not do that in five seconds, the caregiver says "take a bite." If he doesn't take a bite within five more seconds, the caregiver pantomimes taking a bite with an empty spoon and says "take a bite like this." If he still doesn't take a bite after five seconds, then the caregiver takes Cody's hand and feeds him hand-over-hand. During this time, Cody's movie is on pause. If he takes the bite at any time before the hand-over-hand prompt, then the caregiver says "good job taking your bite" and turns on the movie. Cody has 20 seconds before the pattern starts again with another food or drink. So today when Cody came to the lunch session, he could see the Paw Patrol video was on pause and he wanted the therapist to start the video. Of course, she couldn't start it until he took his own bite. Cody got really upset that she would not start the video and that itself increased the unlikelihood that Cody was going to take his own bite! It's possible that he could have been confused by my being in the room. Up until this point, whenever I was in the room we watched Paw Patrol the whole time, because I've never been there for self-feeding. This could have made him more confused about why the video wasn't playing. I'm not sure. Anyhow, he acted up while Damarea was helping him with self-feeding. He turned the spoon over and dumped the food out on the plate. He cried. He kicked. But finally when we got to drinking from the cup, he drank the milk by himself and we got to turn on Paw Patrol-- THANK GOD! He calmed down after that enough for Damarea and I to finally switch places and I started preparing the bites, etc. I can't remember exactly what changed the mood again after Damarea left for the observation room, but he flipped out. He threw the spoon, pushed the plate on the ground, had a royal meltdown. Of course, all the while he's getting more and more food on himself, which makes him even more upset, because he hates to be dirty. He ended up taking his own shirt off, because he was so upset about it being dirty. He got strawberry in his hair. It was a mess. All the while, my job is not to flip and to follow through with protocol. And no I'm not the Mom that just wanted to hug it out. I usually want to ring his little neck when he's like that. No shame. We managed to finish the meal fairly calmly until the therapist laughed that he had strawberry in his hair. Cody flipped. Everybody in the family lounge was amazed to see Cody having such a fit, because he usually pretty calm, especially compared to some of the other kids. I somehow managed to eat my lunch while managing Cody's fit. I got him back to the nap room early and he put up NO FIGHT when it was time to rest. Usually he rolls around on the floor, whines, plays, etc, but today he got under his blanket and went to sleep. We did self-feeding again at our dinner session and it went much better. So well, in fact, that they want me to do self-feeding with him tonight at home. I'm not excited about that, but what can I do?
John and Cole came to visit over the weekend. They were planning to stay through today, because Cody was supposed to have his diagnostic interview for an autism. The doctor actually got a jury summons, so the interview was rescheduled for tomorrow. John and Cole left on Sunday, since there was no need to be here on Monday. And thank God the interview wasn't today after that horrible self-feeding session! I'm hoping Cody gets a lot of good rest tonight, since he won't have a chance for a nap tomorrow. The interview is scheduled for 1:00. Speaking of jury summons, John was supposed to have jury duty starting tomorrow, but he was able to get out of it today. He wasn't planning to try to get out of it, but let's just say I "strongly encouraged" him to get out of it. Since he's now free from jury duty, he's coming back up to Atlanta tonight and will be here for training at "food school" tomorrow and Wednesday. I asked him to stay as long as possible, so he's staying until Wednesday night or Thursday morning. The band is going to Busch Gardens over the weekend. Cole will be spending a LOT of time in Albany with my parents this week.
At this point in our journey, Cody and I are very ready to go home. I have had some moments over the last 6 weeks that I didn't even want to go home, because it will be so challenging when we get there. At least while we're here, I can devote all of my focus to Cody and his treatment. When I get back to Cairo I'll add the stress of work, taking care of our house, feeding the family, taking care of Cole, and all that comes with it. That is scary to me, because Cody's new routine is already a lot of work. BUT I'm burned out. I'm tired of being a single parent. I realized today that I've been present for all but 45 minutes of Cody's treatment. OK some of the time I've been hiding out in Cody's nap room watching Gossip Girl, but no other parent at the Center is doing what I'm doing. Most parents are switching out daily or weekly the responsibility of bringing their child for treatment. In other cases, two parents or a parent and grandparent are there together everyday. There a couple of moms who are the only caregiver I've seen at the Center with their child, but I know they live fairly close by and return to their own home and their own family every night. I love Cody, but we've had WAY too much together time up here and this is probably why we are sometimes at each other's throats. All this to say... John and I are hoping they will allow Cody to finish his treatment in seven weeks rather than eight. We have not discussed this with any of Cody's providers. Honestly, I've been too nervous to, because they haven't hinted at all that Cody may be ready for release earlier than eight weeks. If Cody was not doing well with the treatment, there would be no question in my mind that we needed to complete the full eight weeks and they would probably even extend our stay. They've done that to several families while we've been here. I guess I'm also a little embarrassed to say to the doctor that part of the reason I want to leave early is to go to the beach with our family. Maybe I think it makes me look shallow or like I'm not taking Cody's care seriously if I want to leave treatment in time to go to a beach vacation for Spring Break. I know there are more things for Cody to work on and we could spend 2 more full weeks working on those things, but that would be beyond the original goals that were set for him. Once John is trained, Cody will have met all of the original goals that were set at week 2. He will continue with outpatient therapy every two weeks or once and month. I feel that the things he is working on now could easily be worked on in outpatient therapy. He needed the rigorous therapy up front to get him to even accept the new foods, but I think we're at a place that the therapy can be relaxed and he will still make progress. But... I'm not a medical professional. I guess I'm just setting up my arguments for if they don't think he should leave before April 3. By the way, if he finishes in seven weeks, his last day will be March 27th and we'll move back to Cairo on March 28th.
Cross your fingers.
Last week, in addition to self-feeding, Cody started working on independently drinking from a cup. Let me remind you that this looks a little different than what you might be imagining. Each sip of milk is measured with a dropper from one cup of milk into the pink cup with a cut out for your nose. Then the cup is placed in front of Cody and he picks it up and drinks it. Dr. Criado and all the other therapists who work with Cody have been amazed by his progress in self-feeding and self-drinking. I was especially shocked that he took so well to the cup, because it's unlike what he's ever done before. At home he has ONLY used a soft-spout sippy cup and has never used an open cup. I am surprised at the self-feeding, too, but at least I knew he already had practiced the skill of lifting the spoon of food to his mouth before. Dr. Criado and I have already discussed what else Cody can work on while he continues here at the Marcus Center. Chewing will be a focus as will scooping his own bites of food. Scooping would be monumental, because that would allow him to eat some of his new foods independently at school in the coming months and next year.
Cody's behavior has been not as good over the last few weeks, I'll confess. Perhaps he's tired of being here, confused, overwhelmed, etc and unable to express it. His meltdowns have gotten to where I really don't want to take him to any stores at this point. The last two times I took him anywhere, I had to surfboard carry him to the car when we were done. And just general not following my directions, listening, etc has increased. This morning when Cody got up I could tell it wasn't going to be a great day. He didn't have any real meltdowns before we left the house, but his attitude was not great. When we got to the Marcus Center, he had his first meltdown when someone ahead of us pressed the elevator button and he didn't get to. When I say meltdown, I mean that he threw himself down prostrate on the floor in the middle of the lobby. The bad mood really came to a head during our lunch session when I started training on self-feeding with him. Here is how self-feeding works. The caregiver fills the spoon with the first kind of food, places the spoon on a plate, and puts the plate in front of Cody. He has five seconds to pick up the spoon and take a bite. If he does not do that in five seconds, the caregiver says "take a bite." If he doesn't take a bite within five more seconds, the caregiver pantomimes taking a bite with an empty spoon and says "take a bite like this." If he still doesn't take a bite after five seconds, then the caregiver takes Cody's hand and feeds him hand-over-hand. During this time, Cody's movie is on pause. If he takes the bite at any time before the hand-over-hand prompt, then the caregiver says "good job taking your bite" and turns on the movie. Cody has 20 seconds before the pattern starts again with another food or drink. So today when Cody came to the lunch session, he could see the Paw Patrol video was on pause and he wanted the therapist to start the video. Of course, she couldn't start it until he took his own bite. Cody got really upset that she would not start the video and that itself increased the unlikelihood that Cody was going to take his own bite! It's possible that he could have been confused by my being in the room. Up until this point, whenever I was in the room we watched Paw Patrol the whole time, because I've never been there for self-feeding. This could have made him more confused about why the video wasn't playing. I'm not sure. Anyhow, he acted up while Damarea was helping him with self-feeding. He turned the spoon over and dumped the food out on the plate. He cried. He kicked. But finally when we got to drinking from the cup, he drank the milk by himself and we got to turn on Paw Patrol-- THANK GOD! He calmed down after that enough for Damarea and I to finally switch places and I started preparing the bites, etc. I can't remember exactly what changed the mood again after Damarea left for the observation room, but he flipped out. He threw the spoon, pushed the plate on the ground, had a royal meltdown. Of course, all the while he's getting more and more food on himself, which makes him even more upset, because he hates to be dirty. He ended up taking his own shirt off, because he was so upset about it being dirty. He got strawberry in his hair. It was a mess. All the while, my job is not to flip and to follow through with protocol. And no I'm not the Mom that just wanted to hug it out. I usually want to ring his little neck when he's like that. No shame. We managed to finish the meal fairly calmly until the therapist laughed that he had strawberry in his hair. Cody flipped. Everybody in the family lounge was amazed to see Cody having such a fit, because he usually pretty calm, especially compared to some of the other kids. I somehow managed to eat my lunch while managing Cody's fit. I got him back to the nap room early and he put up NO FIGHT when it was time to rest. Usually he rolls around on the floor, whines, plays, etc, but today he got under his blanket and went to sleep. We did self-feeding again at our dinner session and it went much better. So well, in fact, that they want me to do self-feeding with him tonight at home. I'm not excited about that, but what can I do?
John and Cole came to visit over the weekend. They were planning to stay through today, because Cody was supposed to have his diagnostic interview for an autism. The doctor actually got a jury summons, so the interview was rescheduled for tomorrow. John and Cole left on Sunday, since there was no need to be here on Monday. And thank God the interview wasn't today after that horrible self-feeding session! I'm hoping Cody gets a lot of good rest tonight, since he won't have a chance for a nap tomorrow. The interview is scheduled for 1:00. Speaking of jury summons, John was supposed to have jury duty starting tomorrow, but he was able to get out of it today. He wasn't planning to try to get out of it, but let's just say I "strongly encouraged" him to get out of it. Since he's now free from jury duty, he's coming back up to Atlanta tonight and will be here for training at "food school" tomorrow and Wednesday. I asked him to stay as long as possible, so he's staying until Wednesday night or Thursday morning. The band is going to Busch Gardens over the weekend. Cole will be spending a LOT of time in Albany with my parents this week.
At this point in our journey, Cody and I are very ready to go home. I have had some moments over the last 6 weeks that I didn't even want to go home, because it will be so challenging when we get there. At least while we're here, I can devote all of my focus to Cody and his treatment. When I get back to Cairo I'll add the stress of work, taking care of our house, feeding the family, taking care of Cole, and all that comes with it. That is scary to me, because Cody's new routine is already a lot of work. BUT I'm burned out. I'm tired of being a single parent. I realized today that I've been present for all but 45 minutes of Cody's treatment. OK some of the time I've been hiding out in Cody's nap room watching Gossip Girl, but no other parent at the Center is doing what I'm doing. Most parents are switching out daily or weekly the responsibility of bringing their child for treatment. In other cases, two parents or a parent and grandparent are there together everyday. There a couple of moms who are the only caregiver I've seen at the Center with their child, but I know they live fairly close by and return to their own home and their own family every night. I love Cody, but we've had WAY too much together time up here and this is probably why we are sometimes at each other's throats. All this to say... John and I are hoping they will allow Cody to finish his treatment in seven weeks rather than eight. We have not discussed this with any of Cody's providers. Honestly, I've been too nervous to, because they haven't hinted at all that Cody may be ready for release earlier than eight weeks. If Cody was not doing well with the treatment, there would be no question in my mind that we needed to complete the full eight weeks and they would probably even extend our stay. They've done that to several families while we've been here. I guess I'm also a little embarrassed to say to the doctor that part of the reason I want to leave early is to go to the beach with our family. Maybe I think it makes me look shallow or like I'm not taking Cody's care seriously if I want to leave treatment in time to go to a beach vacation for Spring Break. I know there are more things for Cody to work on and we could spend 2 more full weeks working on those things, but that would be beyond the original goals that were set for him. Once John is trained, Cody will have met all of the original goals that were set at week 2. He will continue with outpatient therapy every two weeks or once and month. I feel that the things he is working on now could easily be worked on in outpatient therapy. He needed the rigorous therapy up front to get him to even accept the new foods, but I think we're at a place that the therapy can be relaxed and he will still make progress. But... I'm not a medical professional. I guess I'm just setting up my arguments for if they don't think he should leave before April 3. By the way, if he finishes in seven weeks, his last day will be March 27th and we'll move back to Cairo on March 28th.
Cross your fingers.
Wednesday, March 13, 2019
Poop and Other Stuff
Not too much to report yet this week. Cody has been working on self-feeding at two sessions per day. Yesterday at oral motor therapy he started working on self-feeding with one of his "safe" foods (applesauce in a cup with green in it AKA pear applesauce). Short back story- Cody holds his poop. For days. We pump him full of Miralax until he can't hold it anymore. It happens every couple of weeks for whatever reason. His behavior gets increasingly worse as the "holding" days go by. Tuesday it had gotten really bad. So, he starts crying during oral motor skills because he felt the need to poop. Naturally the therapist asked me if I wanted to take Cody to the bathroom. My instinct was no, but wouldn't a "normal" mom say yes? I mean, a "normal" kid would go to the bathroom and poop. Cody is scared of the bathroom and holds his poop. So, trying to be "normal" I said ok and took Cody to the bathroom and asked him if he needed to poop. When he just looked at me like I was crazy, I took him back to the therapy room. That set off a tantrum like some of you have never seen. Also, the therapist just uses random (and babyish to me) toys as incentives and Cody doesn't care about them at all. So the therapist gave up on self-feeding and moved back to chewing like she worked on last week. I calmed Cody down by talking about his birthday coming up in June, since none of the toys she had were interesting to him. I'm not trying to say it was the therapist's fault. I'm just saying there were a lot of pieces that just didn't line up right yesterday and made for a terrible session. He proceeded to do just fine with self-feeding at the next two sessions. He struggles with the motor skill, but he's trying.
After "school" it was really nice outside, so I took Cody to the playground by our apartment. I knew I was playing with fire, because he was so temperamental due to holding his poop. I also knew that running around and playing would make it harder to hold the poop than sitting in the apartment watching tv. I was right. Yet another example, however, of me not being a "normal" mom. I watched Cody many times drop to his hands and knees or do "potty dances" and I never even spoke a word about going to the potty or asking if he needed to go. I've learned by experience that talking about pooping only makes things worse. The best thing to do, in addition to the Miralax, is ignore it and give him as much alone time as possible. I'm sure the other moms at the playground didn't know what to think about me or Cody, but oh well. After about 30 minutes, Cody came up to me and said "maybe we could drive home now." I'm assuming this is because he finally pooped and did feel much like playing. The rest of the evening was pretty uneventful...
...As was most of today. I fed breakfast and dinner sessions. He worked on self-feeding at snack and lunch. We played on the playground at the Marcus Center after school. We made it through the Starbucks drivethru and all the way to the apartment before remembering the three stuffed dogs Cody had taken to the playground with him. Yes, that means we drove all the way back to the Marcus Center to retrieve the dogs. Luckily we still made it there and back before 4:30 and so the traffic was still decent.
Cody was ready for dinner earlier than expected tonight. I prepared string cheese, pineapple, french fry, and corn purees. (They were already in the fridge). I had noticed on a previous occasion that when I make corn it is much thicker than at the center. After you blend the corn you have to put it through a strainer to get out the hulls. I did all of that, but still my corn was much more firm than what I had fed Cody at the Center. Anyhow I went on with it, because last time I made corn it was no problem, despite the thickness. We got about 20 bites into our session and Cody threw up following a bite of corn. He threw up one other time at the Center, so it's not totally unheard of, but it did surprise me. Cody didn't like getting dirty, but he was otherwise fine, so I kept going. We got another 10-12 bites along and Cody threw up a second time after a bite of corn. Then I knew it must be the corn hulls and I didn't puree my corn correctly. At that point I threw in the towel and declared the meal over. I think I have mentioned before that you have to weigh the food before and after the meal to see how many grams Cody ate. You're also supposed to weigh the spills. So, yes, I cleaned up Cody's vomit with paper towels (which each weigh one gram) and subtracted that amount from Cody's total gram count for dinner. We came in way lower tonight than Cody normally does. I'm just thankful Cody handled it so well and went right on with his evening like nothing had happened.
That's all the therapy news, so....
Other random events:
Thank you everyone for the cards, packages, and gifts!! Shout out to a special class of PreK students at Southside for sending Cody and I hand-drawn "thinking of you" cards! Most of them don't even know me yet, but they will next year!
After "school" it was really nice outside, so I took Cody to the playground by our apartment. I knew I was playing with fire, because he was so temperamental due to holding his poop. I also knew that running around and playing would make it harder to hold the poop than sitting in the apartment watching tv. I was right. Yet another example, however, of me not being a "normal" mom. I watched Cody many times drop to his hands and knees or do "potty dances" and I never even spoke a word about going to the potty or asking if he needed to go. I've learned by experience that talking about pooping only makes things worse. The best thing to do, in addition to the Miralax, is ignore it and give him as much alone time as possible. I'm sure the other moms at the playground didn't know what to think about me or Cody, but oh well. After about 30 minutes, Cody came up to me and said "maybe we could drive home now." I'm assuming this is because he finally pooped and did feel much like playing. The rest of the evening was pretty uneventful...
...As was most of today. I fed breakfast and dinner sessions. He worked on self-feeding at snack and lunch. We played on the playground at the Marcus Center after school. We made it through the Starbucks drivethru and all the way to the apartment before remembering the three stuffed dogs Cody had taken to the playground with him. Yes, that means we drove all the way back to the Marcus Center to retrieve the dogs. Luckily we still made it there and back before 4:30 and so the traffic was still decent.
Cody was ready for dinner earlier than expected tonight. I prepared string cheese, pineapple, french fry, and corn purees. (They were already in the fridge). I had noticed on a previous occasion that when I make corn it is much thicker than at the center. After you blend the corn you have to put it through a strainer to get out the hulls. I did all of that, but still my corn was much more firm than what I had fed Cody at the Center. Anyhow I went on with it, because last time I made corn it was no problem, despite the thickness. We got about 20 bites into our session and Cody threw up following a bite of corn. He threw up one other time at the Center, so it's not totally unheard of, but it did surprise me. Cody didn't like getting dirty, but he was otherwise fine, so I kept going. We got another 10-12 bites along and Cody threw up a second time after a bite of corn. Then I knew it must be the corn hulls and I didn't puree my corn correctly. At that point I threw in the towel and declared the meal over. I think I have mentioned before that you have to weigh the food before and after the meal to see how many grams Cody ate. You're also supposed to weigh the spills. So, yes, I cleaned up Cody's vomit with paper towels (which each weigh one gram) and subtracted that amount from Cody's total gram count for dinner. We came in way lower tonight than Cody normally does. I'm just thankful Cody handled it so well and went right on with his evening like nothing had happened.
That's all the therapy news, so....
Other random events:
- Last night and tonight were the first times Cody realized that I was trying to get him ready for bed before the sun had gone down. My mom said he was "quick!" I said "quick" would have been noticing Sunday night.
- I recently told Cody that my favorite dog on the Paw Patrol is Everest. A couple times since then when the show is on, Cody will say "Mommy... I have a surprise for you!", then lead me to the tv and show me that Everest is on that episode. I think it's so sweet of him to notice and think of me... and I have to take note of this, because, despite what my mom thinks, he's not always so sweet! Cody and I have come toe to toe more over the last 6 weeks than ever before, but I'm sure that's expected.
- Today one of the feeding therapists came in the family lounge to pick up another patient. I about jumped out of my seat when I saw she was wearing a pink Medtronic insulin pump! She totally understood my enthusiasm, however, since we both know it's not everyday that you meant a fellow insulin pumper. I am wearing a more updated model of the one she has, so I'm hoping we can have another conversation in the future so I can tell her about all the new perks on the 670G.
- It's LGPE week in Cairo, so Cole has been shipped off to CC's house. If I was home, I would be doing a LOT of single parenting of TWO boys this week. One of Cairo HS's bands performed tonight and the other will perform tomorrow night. LGPE is hosted at Cairo High School, for those who don't know. So, John will be stressed and busy. He's bringing Cole up on Saturday night and they will stay until after Cody's diagnostic interview for autism on Monday. I can't wait to see Coley-Cole!
- It's time to watch Gossip Girl (I started Season 1 sometime last week) and do a word search book that a friend sent me.
Thank you everyone for the cards, packages, and gifts!! Shout out to a special class of PreK students at Southside for sending Cody and I hand-drawn "thinking of you" cards! Most of them don't even know me yet, but they will next year!
Monday, March 11, 2019
Show Me
Weekend:
- Went to Target & Kroger. Came home with groceries and ANOTHER new Paw Patrol toy.
- Rested. Recharged.
- Made the poor decision to go to the playground without having a snack.
- Questioned my parenting skills as Cody skipped people in line, avoided me, and refused to listen to my directions.
- Hauled hangry child away from the playground and into the apartment.
- Strapped screaming child into booster seat for evening meal.
- Wondered why no one had called the police due to hysterical screaming.
- Heart broke as Cody screamed "I want to go to Cairo!"
- Fed angry child despite him spitting out the first two bites.
- Remained calm.
- Child calmed down and finished the meal peacefully.
- Lazy Sunday morning post time-change.
- 2 protocol puree meals before museum visit. 1 after.
- First visit to Fernbank. Liked dinosaurs, disliked IMAX, loved gift shop.
- Goodbye weekend.
Cody at IMAX
Monday:
- Fed breakfast.
- Talked to nutritionist about the weekend and plans to switch Cody from Kroger brand to national brands.
- Therapists fed Cody snack and lunch to successfully drop "mouth checks." No longer have to say "show me" to check that Cody swallowed his food. Saves massive amounts of time. LOVE IT!
- Took Cody to the playground between snack and lunch sessions.
- Two new families at the Center. One with 4 adults accompanying her made for a crowded family lounge. Other family has an older child, so not in family lounge.
- I celebrated National Nap Day, while Cody rolled around on the floor during "naptime."
- Fed dinner session and lived the dream of not needing to check to be sure Cody swallowed after every bite.
- Finished 10 minutes early at every session.
- Answered "jealous" parents' questions about why we were finished early, what is Cody's gram cap, etc etc.
- Rain outside made Cody unhappy.
- Started reading an actual book while Cody is glued to tablet as usual.
- Dinner is up next.
Hope that covers it, because that's all the energy I can give for today :)
And here's a picture of my other cutie- Coley Cole.
Friday, March 8, 2019
Week 5
I'm sorry, loyal readers, for the lapse in blog posts. My mom arrived Wednesday afternoon. I tried to post before she got here, but Cody sat in my lap and closed the computer, so that didn't happen.
Wednesday morning Cody and I went back through the Starbucks drivethru since the coffee delivery from my mom didn't arrive on Tuesday afternoon. Cody had a make-up session of oral motor skills on Wednesday during snack session. Dr. Criado had notified the SLP that she would like to assess Cody on self-feeding. I was surprised to hear that, but interested to see how Cody would handle it. A little background- Cody has always been disinterested in self-feeding. He would hold the spoon and make attempts every few months. When he started occupational therapy she did not make a big deal over his inability to self-feed, especially coupled his not eating. Basically she thought it would be harder to get him to eat new things if he was not willing to be spoon fed by someone else. I pushed it at home anyway, because I was tired of feeding Cody before I could eat my own dinner. I wanted everyone to be able to eat at the same time. Over the summer I finally got him to start regularly feeding himself with a spoon. He has poor motor skills, so it's not easy for him. That coupled with an inability to cope with making "mistakes," spills, or messes, made self-feeding a huge challenge. All spills have to be wiped up immediately and if it's too bad, he'll refuse to feed himself after making a "mistake." He is more successful with yogurt than applesauce, so we would sometimes compromise- he would self-feed the yogurt in return for me feeding him the applesauce. We pretty much had that down until we got here. Obviously at Marcus he has been spoon-fed by someone every step of the way. He got used to not having to self-feed so he pretty much started refusing to self-feed his "safe foods" as soon as we got here. Fast forward to Wednesday, I really didn't know how Cody would react to being asked to self-feed a new food. They strategically chose his very favorite new food- strawberry puree! Cody has already told me that he now prefers strawberries over "applesauce in a cup with green in it" (pear applesauce). In the session, the SLP demonstrated for Cody how she wanted him to pick up the spoon and feed himself a "bite" of strawberries and put the spoon back in the bowl. She used an empty bowl and spoon. She placed the bowl of strawberries and spoon in front of Cody and said take a bite. At first he looked at it. She demonstrated again after a prescribed amount of time went by and he picked up the spoon and fed himself! He was rewarded with getting to play with a toy. (He had already been told he would get the toy if he took the bite). He did this over and over, sometimes more successful with the spoon than other times. Some of the time he would balance the spoon on the edge of the bowl and lever some of the food high enough for him to get his mouth to it and eat it that way, not actually lifting the spoon at all. He managed to get food in his mouth and not spill it (miraculously) every time. I was surprised but very happy with his attempts! She also continued working with him on chewing small pieces of pear on a flat "spoon." He did this many times without problems and sometimes even kept the piece of pear in his mouth and ate it after the chewing part was complete.
The SLP reported all of this back to Dr. Criado who later spoke to me about Cody's next goal. He has flown through all of the goals that were initially set for him. My mom and John being trained are still goals, but he has already met the other goals. He is up to the highest amount of food on the spoon and has 16 purees he will eat. They reduced the time between bites to 20 seconds, which is much more natural than 30, by the way. Next they will drop the mouth clean checks, because he's always successfully swallowing his bites. So now a decision needs to be made on what his next goal will be. They will choose to focus on chewing or working on self-feeding. They will take my opinion into consideration when deciding on the goal. My choice is actually whichever skill he can be more successful with at this point. If he's ready for self-feeding, I'm happy for him to go that route, but if the chewing seems to be better at this point, I'm happy to go that way too. Being able to demonstrate better chewing ability would mean he could advance in texture from puree to the next level. They said they might start with something like getting him to self-feed 5 bites at the beginning of the meal then have the caregiver continue with the rest of the meal- something small like that. Anyway, this goal setting has been the focus of many conversations over the last couple days.
Wednesday afternoon my mom finally arrived after having her car repaired in Columbus. Cody was very glad to see her and the Paw Patrol toy she brought for him! :) We had a bad experience with UberEats, but finally enjoyed our Doc Chey's for dinner.
Thursday morning Mom went with us to "food school" and started her training. Her first step was just to learn to collect data in the observation room as I fed. She started learning to feed Cody at the next session and progressed through a lot of the steps before we left on Wednesday. She only had two "grandma moments" where she kissed his finger when he was crying and hugged him when he was asking for a hug. You're technically supposed to ignore crying, whining, etc, but she still passed! Ha! After food school we went to Whole Foods and picked up dinner. At bedtime Cody needed to be reassured that CC was not "going to see Boss," meaning she was not leaving and would still be there when he woke up in the morning.
This morning I woke up feeling nauseous and was a little worried that I had caught a stomach bug that's been going around the center. Fortunately I started feeling better before we left home. Mom did three meal sessions with Cody before she had to leave to see Davis play baseball in Columbus this afternoon. Cody LOVED having her here and we were very nervous about how he would react when she left. He would not even let her out of his sight for the two days she was here. He had to wait outside the bathroom door for her even. Fortunately, he was ok with her having to "go see Boss" and even pressed the elevator button for her when she had to leave food school. There's a chance she'll be back on Saturday, because she may have a hard time keeping Boss from driving up here to see him this weekend. Boss has only seen him one time since he left and was pretty jealous of CC getting to come spend a couple days with us. No decisions have been made yet, so we'll see.
I think that pretty much brings you up to date on Cody's progress. In other news, Cole does NOT have strep throat. Of course we learned this after John kept him home for two days waiting on the test results. Oh well! Hopefully the time at home means he'll be extra ready to get back to school healthy on Monday. John has told me that the tornado damage in Cairo is unreal. He saw more in different areas today and was blown away with how everyone managed to come out unharmed. Southside is raising money to replaced the playground that was destroyed.
The mother and grandmother from Ohio who brought the 13 year old boy disappeared this week. There was some kind of incident on Monday morning with the boy's severe behavior. I think a decision may have been made to try to treat some of the behavior issues before progressing with feeding treatment. It's sort of weird after having several lengthy conversations with them that they are suddenly gone without an explanation. There was also another 13 year old boy who was supposed to have treatment who either never showed up or came and went without my noticing. These two sudden openings mean that we have a new friend at food school. They received their call on Monday asking if their 2.5 year old could begin treatment the next day!!! Can you IMAGINE??? They said they couldn't begin Tuesday but would start Wednesday. They had been living with the mother's parents in Swainsboro, but own a home in Smyrna. Tuesday they moved their belongings back to Smyrna and started treatment Wednesday morning. We had 2.5 weeks to get ready to move up here. I can't imagine having less than 2 DAYS! They are a very sweet family and their son is just too cute. It seems that every single child in feeding treatment has different issues and diagnoses that led them to this point. It's amazing really.
Cody and I are hoping the rain will hold out and we can do something tomorrow before storms return on Sunday. We may or may not have any visitors this weekend, as I mentioned earlier. Hopefully we'll find something to do other than watching Fizzy Fun Toys and buy new Paw Patrol toys at Target.
Have a great weekend!
Wednesday morning Cody and I went back through the Starbucks drivethru since the coffee delivery from my mom didn't arrive on Tuesday afternoon. Cody had a make-up session of oral motor skills on Wednesday during snack session. Dr. Criado had notified the SLP that she would like to assess Cody on self-feeding. I was surprised to hear that, but interested to see how Cody would handle it. A little background- Cody has always been disinterested in self-feeding. He would hold the spoon and make attempts every few months. When he started occupational therapy she did not make a big deal over his inability to self-feed, especially coupled his not eating. Basically she thought it would be harder to get him to eat new things if he was not willing to be spoon fed by someone else. I pushed it at home anyway, because I was tired of feeding Cody before I could eat my own dinner. I wanted everyone to be able to eat at the same time. Over the summer I finally got him to start regularly feeding himself with a spoon. He has poor motor skills, so it's not easy for him. That coupled with an inability to cope with making "mistakes," spills, or messes, made self-feeding a huge challenge. All spills have to be wiped up immediately and if it's too bad, he'll refuse to feed himself after making a "mistake." He is more successful with yogurt than applesauce, so we would sometimes compromise- he would self-feed the yogurt in return for me feeding him the applesauce. We pretty much had that down until we got here. Obviously at Marcus he has been spoon-fed by someone every step of the way. He got used to not having to self-feed so he pretty much started refusing to self-feed his "safe foods" as soon as we got here. Fast forward to Wednesday, I really didn't know how Cody would react to being asked to self-feed a new food. They strategically chose his very favorite new food- strawberry puree! Cody has already told me that he now prefers strawberries over "applesauce in a cup with green in it" (pear applesauce). In the session, the SLP demonstrated for Cody how she wanted him to pick up the spoon and feed himself a "bite" of strawberries and put the spoon back in the bowl. She used an empty bowl and spoon. She placed the bowl of strawberries and spoon in front of Cody and said take a bite. At first he looked at it. She demonstrated again after a prescribed amount of time went by and he picked up the spoon and fed himself! He was rewarded with getting to play with a toy. (He had already been told he would get the toy if he took the bite). He did this over and over, sometimes more successful with the spoon than other times. Some of the time he would balance the spoon on the edge of the bowl and lever some of the food high enough for him to get his mouth to it and eat it that way, not actually lifting the spoon at all. He managed to get food in his mouth and not spill it (miraculously) every time. I was surprised but very happy with his attempts! She also continued working with him on chewing small pieces of pear on a flat "spoon." He did this many times without problems and sometimes even kept the piece of pear in his mouth and ate it after the chewing part was complete.
The SLP reported all of this back to Dr. Criado who later spoke to me about Cody's next goal. He has flown through all of the goals that were initially set for him. My mom and John being trained are still goals, but he has already met the other goals. He is up to the highest amount of food on the spoon and has 16 purees he will eat. They reduced the time between bites to 20 seconds, which is much more natural than 30, by the way. Next they will drop the mouth clean checks, because he's always successfully swallowing his bites. So now a decision needs to be made on what his next goal will be. They will choose to focus on chewing or working on self-feeding. They will take my opinion into consideration when deciding on the goal. My choice is actually whichever skill he can be more successful with at this point. If he's ready for self-feeding, I'm happy for him to go that route, but if the chewing seems to be better at this point, I'm happy to go that way too. Being able to demonstrate better chewing ability would mean he could advance in texture from puree to the next level. They said they might start with something like getting him to self-feed 5 bites at the beginning of the meal then have the caregiver continue with the rest of the meal- something small like that. Anyway, this goal setting has been the focus of many conversations over the last couple days.
Wednesday afternoon my mom finally arrived after having her car repaired in Columbus. Cody was very glad to see her and the Paw Patrol toy she brought for him! :) We had a bad experience with UberEats, but finally enjoyed our Doc Chey's for dinner.
Thursday morning Mom went with us to "food school" and started her training. Her first step was just to learn to collect data in the observation room as I fed. She started learning to feed Cody at the next session and progressed through a lot of the steps before we left on Wednesday. She only had two "grandma moments" where she kissed his finger when he was crying and hugged him when he was asking for a hug. You're technically supposed to ignore crying, whining, etc, but she still passed! Ha! After food school we went to Whole Foods and picked up dinner. At bedtime Cody needed to be reassured that CC was not "going to see Boss," meaning she was not leaving and would still be there when he woke up in the morning.
This morning I woke up feeling nauseous and was a little worried that I had caught a stomach bug that's been going around the center. Fortunately I started feeling better before we left home. Mom did three meal sessions with Cody before she had to leave to see Davis play baseball in Columbus this afternoon. Cody LOVED having her here and we were very nervous about how he would react when she left. He would not even let her out of his sight for the two days she was here. He had to wait outside the bathroom door for her even. Fortunately, he was ok with her having to "go see Boss" and even pressed the elevator button for her when she had to leave food school. There's a chance she'll be back on Saturday, because she may have a hard time keeping Boss from driving up here to see him this weekend. Boss has only seen him one time since he left and was pretty jealous of CC getting to come spend a couple days with us. No decisions have been made yet, so we'll see.
I think that pretty much brings you up to date on Cody's progress. In other news, Cole does NOT have strep throat. Of course we learned this after John kept him home for two days waiting on the test results. Oh well! Hopefully the time at home means he'll be extra ready to get back to school healthy on Monday. John has told me that the tornado damage in Cairo is unreal. He saw more in different areas today and was blown away with how everyone managed to come out unharmed. Southside is raising money to replaced the playground that was destroyed.
The mother and grandmother from Ohio who brought the 13 year old boy disappeared this week. There was some kind of incident on Monday morning with the boy's severe behavior. I think a decision may have been made to try to treat some of the behavior issues before progressing with feeding treatment. It's sort of weird after having several lengthy conversations with them that they are suddenly gone without an explanation. There was also another 13 year old boy who was supposed to have treatment who either never showed up or came and went without my noticing. These two sudden openings mean that we have a new friend at food school. They received their call on Monday asking if their 2.5 year old could begin treatment the next day!!! Can you IMAGINE??? They said they couldn't begin Tuesday but would start Wednesday. They had been living with the mother's parents in Swainsboro, but own a home in Smyrna. Tuesday they moved their belongings back to Smyrna and started treatment Wednesday morning. We had 2.5 weeks to get ready to move up here. I can't imagine having less than 2 DAYS! They are a very sweet family and their son is just too cute. It seems that every single child in feeding treatment has different issues and diagnoses that led them to this point. It's amazing really.
Cody and I are hoping the rain will hold out and we can do something tomorrow before storms return on Sunday. We may or may not have any visitors this weekend, as I mentioned earlier. Hopefully we'll find something to do other than watching Fizzy Fun Toys and buy new Paw Patrol toys at Target.
Have a great weekend!
Tuesday, March 5, 2019
You Can't Make This Stuff Up
Seriously... universe... get it together! Let's just start with the worst part and work our way up to the good. Sunday night there was a F2 tornado in Cairo. John had to get Cole out of bed to hide in the closet while it went through. Our house and ALL lives in Cairo were spared, thank God. But lots of homes and businesses near downtown Cairo were destroyed or damaged. It seems that my school may have some minor damage as does our church. What concerns me most is that the area the tornado hit is where my students live. I'm so thankful that I know none of them were seriously injured, but I am worried about their homes. This is our second major weather event this school year and the kids were already experiencing some PTSD. When it would rain the kids would start asking about hurricanes. Now we add tornadoes. Cairo is a very small place and everyone really rallies together in times like this. Cairo was lucky compared to areas in Alabama that also experienced tornadoes on Sunday. So many lives were lost. The scary part to me is that since our house was spared during Hurricane Michael and during this tornado, I'm left feeling that we are next. Surely the next major storm is coming for us. We can't get lucky every single time. I have always felt that way when I see tragedies around me. School has been out for two days in Cairo and will resume tomorrow. I am praying for all of my colleagues as they deal with emotionally scarred children that will come back to Southside tomorrow. I wish I could be there for them.
Moving up the list... My mom should be here right now and she's not. She called us this morning from Target picking out a toy to bring Cody. She planned to be here about the time we got out of "food school" today. Unfortunately, she had car trouble just past Columbus. She found a Ford place to take her car to in Columbus and the news was not good. Her car needs parts that they had to order and will not arrive until tomorrow morning. So, Mom is in Columbus for the night. Cody was very excited today about seeing CC and getting his new toy. I told him in the car on the way home that she wouldn't be here until tomorrow. He was silent for the next hour, but now he's happily playing. He never said he was sad or disappointed, but I think that's why he wasn't talking. Cody is super resilient (obviously), so we'll make it through until CC makes it here. The Marcus Center was planning to train her on Wednesday and Thursday, but now we will have to put that off as well. I am not sure if one day of training is enough or not, so we will wait and see what they decide to do.
Still on the bad side of the list... I just got a text message from John as I was writing this post that Cole's babysitter called and he has a fever of 101. I know he was exposed to strep throat recently by one of his "classmates," but we don't know if that's it yet. John is racing to pick him up and get him to the urgent care place that just opened in Cairo. They close at 5:30 and when I called them they said it will probably be too late when he gets there. Yeah. Thanks. John will have to deal with sick Cole on his own this time, since my mom is stuck in Columbus. I know John does not want to miss even one minute of work until after Festival, especially after the kids were just out for two days... but he may not have a choice if Cole is sick.
Still moving up... I got up this morning with a sore throat, went to the kitchen to fix coffee, and found I had bought whole beans rather than ground coffee. NO COFFEE! UGH. Luckily, we were up early enough that I was able to drive through Starbucks on the way to the Marcus Center. And since i was already there... might as well get a blueberry muffin too, right?? So that turned out pretty well.
Working towards the good stuff... We had a good visit with Daddy/John this weekend. Mom went to Cairo on Friday and picked up Cole from daycare so that John could get off earlier than he would have on Friday. Saturday morning Cody happily discovered that Daddy had arrived! We took Daddy to the Children's Museum of Atlanta (Cody's second visit now) and had a lot of fun. Cody was chosen to participate in the music and movement show and had a lot of fun showing Daddy all the cool exhibits. We rested and had lunch, then John took Cody down the street to the neighborhood playground. I got to spend some time ALONE and made some more of Cody's purees. I didn't think they were ever coming home. I guess they were having too much fun. Sunday morning Cody and I slept very late while Daddy went to get doughnuts. The one thing I wanted to do while John was in town was go to the grocery store by myself! Even though I knew John needed to get on the road (we knew bad weather was coming), I was able to get out early and go to Kroger, Publix, and Target by myself. Kroger was my main stop. I went to Publix and Target on the hunt for monkey yogurt. I didn't find any, but that's ok, because Cody has hardly been eating monkey yogurt these days. I don't think he's eaten any yogurt in two days, which must be a record for him. After I got back to the apartment, it was definitely time for John to leave. He made it to Albany just as they were getting their first tornado warning. He said the only time he was scared driving was before he got to Albany, so at least he didn't have Cole with him at the time.
Over the weekend, Cole stayed with my parents and got to hang out with some of my mom's family. They were in Albany to cheer on my cousin who ran in the Snickers marathon on Saturday morning. The race goes right by my parents' house, so Cole got to sit in his lawn chair and watch the runners go by. I'm sure he spent most of the morning trying to go in the road himself. Mom said he ate grapes and blueberries over the weekend, which are two new foods for him! John also got him to eat pineapple on Sunday night. I have said before that if Cole was my first child, then I would definitely be concerned about his picky eating. But since he came after CODY, Cole is fine :) He's definitely picky, but more like a normal picky child. And he's regularly adding new things to his diet. Go Coley-Cole!
You see I saved all news about Cody's feeding progress to the end, because I started with the bad stuff and will end with the good stuff. Cody is doing great! We did 4 puree meals over the weekend and John got to witness them all. We had just a few bad moments, but overall he's making great progress. I think I mentioned in the last post that they are working on getting him to drink milk from a cup. Today they were able to add drinking milk to his meal and then they trained me on cup drinking. Now he's eating 4 bites of food and then a swallow of milk... similar to how a "normal" person might eat a meal. We'll have our first home meal with the addition of drinking tonight. Today Cody has his weekly oral motor skills session and he didn't great! Last time he cried through it and today he made real progress. She started getting him to chew on an empty EZ spoon, but by the end she was getting him to chew 5 times on a small piece of pear on the EZ spoon. A few times the pear stayed in his mouth and he swallowed it. The pear started as mostly mashed and by the end of the session it was a very small, but solid piece of pear. He'll have another session of oral motor skills tomorrow to make up for the one we missed last week during the home visit. Hopefully he'll continue today's progress. The next step in feeding this week was going to be training my mom (like I mentioned above). I'm not sure what the plan will be tomorrow or if they will just maintain what we're doing until my mom can get here.
Cole in the closet during the tornado Sunday night.
Moving up the list... My mom should be here right now and she's not. She called us this morning from Target picking out a toy to bring Cody. She planned to be here about the time we got out of "food school" today. Unfortunately, she had car trouble just past Columbus. She found a Ford place to take her car to in Columbus and the news was not good. Her car needs parts that they had to order and will not arrive until tomorrow morning. So, Mom is in Columbus for the night. Cody was very excited today about seeing CC and getting his new toy. I told him in the car on the way home that she wouldn't be here until tomorrow. He was silent for the next hour, but now he's happily playing. He never said he was sad or disappointed, but I think that's why he wasn't talking. Cody is super resilient (obviously), so we'll make it through until CC makes it here. The Marcus Center was planning to train her on Wednesday and Thursday, but now we will have to put that off as well. I am not sure if one day of training is enough or not, so we will wait and see what they decide to do.
Still on the bad side of the list... I just got a text message from John as I was writing this post that Cole's babysitter called and he has a fever of 101. I know he was exposed to strep throat recently by one of his "classmates," but we don't know if that's it yet. John is racing to pick him up and get him to the urgent care place that just opened in Cairo. They close at 5:30 and when I called them they said it will probably be too late when he gets there. Yeah. Thanks. John will have to deal with sick Cole on his own this time, since my mom is stuck in Columbus. I know John does not want to miss even one minute of work until after Festival, especially after the kids were just out for two days... but he may not have a choice if Cole is sick.
Still moving up... I got up this morning with a sore throat, went to the kitchen to fix coffee, and found I had bought whole beans rather than ground coffee. NO COFFEE! UGH. Luckily, we were up early enough that I was able to drive through Starbucks on the way to the Marcus Center. And since i was already there... might as well get a blueberry muffin too, right?? So that turned out pretty well.
Working towards the good stuff... We had a good visit with Daddy/John this weekend. Mom went to Cairo on Friday and picked up Cole from daycare so that John could get off earlier than he would have on Friday. Saturday morning Cody happily discovered that Daddy had arrived! We took Daddy to the Children's Museum of Atlanta (Cody's second visit now) and had a lot of fun. Cody was chosen to participate in the music and movement show and had a lot of fun showing Daddy all the cool exhibits. We rested and had lunch, then John took Cody down the street to the neighborhood playground. I got to spend some time ALONE and made some more of Cody's purees. I didn't think they were ever coming home. I guess they were having too much fun. Sunday morning Cody and I slept very late while Daddy went to get doughnuts. The one thing I wanted to do while John was in town was go to the grocery store by myself! Even though I knew John needed to get on the road (we knew bad weather was coming), I was able to get out early and go to Kroger, Publix, and Target by myself. Kroger was my main stop. I went to Publix and Target on the hunt for monkey yogurt. I didn't find any, but that's ok, because Cody has hardly been eating monkey yogurt these days. I don't think he's eaten any yogurt in two days, which must be a record for him. After I got back to the apartment, it was definitely time for John to leave. He made it to Albany just as they were getting their first tornado warning. He said the only time he was scared driving was before he got to Albany, so at least he didn't have Cole with him at the time.
Cody playing with the ball machine at the Children's Museum
Over the weekend, Cole stayed with my parents and got to hang out with some of my mom's family. They were in Albany to cheer on my cousin who ran in the Snickers marathon on Saturday morning. The race goes right by my parents' house, so Cole got to sit in his lawn chair and watch the runners go by. I'm sure he spent most of the morning trying to go in the road himself. Mom said he ate grapes and blueberries over the weekend, which are two new foods for him! John also got him to eat pineapple on Sunday night. I have said before that if Cole was my first child, then I would definitely be concerned about his picky eating. But since he came after CODY, Cole is fine :) He's definitely picky, but more like a normal picky child. And he's regularly adding new things to his diet. Go Coley-Cole!
Cole watching the Snickers Marathon on Saturday morning
You see I saved all news about Cody's feeding progress to the end, because I started with the bad stuff and will end with the good stuff. Cody is doing great! We did 4 puree meals over the weekend and John got to witness them all. We had just a few bad moments, but overall he's making great progress. I think I mentioned in the last post that they are working on getting him to drink milk from a cup. Today they were able to add drinking milk to his meal and then they trained me on cup drinking. Now he's eating 4 bites of food and then a swallow of milk... similar to how a "normal" person might eat a meal. We'll have our first home meal with the addition of drinking tonight. Today Cody has his weekly oral motor skills session and he didn't great! Last time he cried through it and today he made real progress. She started getting him to chew on an empty EZ spoon, but by the end she was getting him to chew 5 times on a small piece of pear on the EZ spoon. A few times the pear stayed in his mouth and he swallowed it. The pear started as mostly mashed and by the end of the session it was a very small, but solid piece of pear. He'll have another session of oral motor skills tomorrow to make up for the one we missed last week during the home visit. Hopefully he'll continue today's progress. The next step in feeding this week was going to be training my mom (like I mentioned above). I'm not sure what the plan will be tomorrow or if they will just maintain what we're doing until my mom can get here.
Friday, March 1, 2019
Week 4
The beginning of Week 4 has definitely had its highs and lows. Cody has started pushing back a little bit in some of his sessions. I have had to be persistent in getting him to take some of his bites and with a couple mouth checks. I fed him all 4 times at school yesterday after feeding him a couple times the day before AND last night... so we've had a LOT of time together this week. In all this togetherness I ended up feeling like Cody would never just play by himself and was either needing me to do something for him or he was watching Fizzy Fun Toys on his tablet. It's sometimes hard to understand exactly what game 3 year olds are making up for you to play and it just got very frustrating. I'm the kind of mom that loves a teacher work day when I get to go to work and not take care of ANYONE"S kids, but I'm still being productive. Those are my favorite days. I'm not made to be at stay at home mom, even though I sometimes need to be because of all of Cody's issues. So, this week it's been extra hard to be a single parent, because you don't have the option of tag teaming when you need a break. But... John is coming tonight, so this weekend should be a good time to recharge.
Cody is up to rounded bolus and I've been approved to feed him that amount at home now. This weekend we will do 2 "school" meals a day and fill in the rest with his preferred foods. John is bringing up the second blender, so I can really get going on making more foods to have on hand. At school yesterday Cody told Sasha and I (without being asked) that he likes rice and strawberries! Good news! So after school yesterday I made rice to feed Cody for dinner... and he HATED it! Either I prepared it differently than they do at school, despite following the given directions, or he's confused about which food is rice. In the car today he told me rice is yellow. He may be thinking about corn or french fries. Both are yellow or yellowish in color. They don't tell him what each food is during sessions, so I think he's just guessing.
During snack session today, they assessed Cody on cup drinking. They're using something called a Flexi-Cut Cup that has an indention for your nose, so it doesn't hit your nose when you drink. He's working on drinking 2% milk right now. I think I mentioned before that we'd like him to learn to drink water, but it doesn't have much nutritional value, so they're working on milk first. He already drinks milk, but only from a soft spout sippy cup. I have to say that I was expecting a huge throw down at the cup drinking session... but Cody did amazingly well. He never got upset, although he did turn his head away from the cup the first few times. They did get him to drink the milk and found out what amount of milk per sip works well for him right now. I think his being willing to drink from the flexi-cup on the first day shows a lot of promise for him being able to drink from regular cups in the near future.
We have had a few friends leave the program since we began, which means we've had some recent additions as well. One of our new friends is a 13 year old boy from Ohio. His mom and grandmother are with him and we had a nice conversation yesterday. They are staying at the hotel we were planning to stay at before we found this condo. Over the last 2 weeks before starting the program he had only eaten McDonald's chocolate chip cookies and Tyson chicken nuggets. In the past he's had other safe foods. He's severely autistic. They told me that if they had known about the feeding program at Marcus they would have brought him years ago. His treatment program is very different from Cody. Most notably he's starting with very small bites of whole food rather than puree. His mom is also in all of his sessions with him from the beginning, unlike Cody who I was separated from until the third week. I think these differences are because of his age.
I will miss seeing Cole this weekend. He's with my parents in Albany. He will actually get to visit with some of my extended family who will be in town to see my cousin run in the Snickers Marathon. I'm sure he'll have fun and be 100% catered to. Cody will also have a great weekend with his daddy and maybe I will FINALLY have a minute alone. I might even get to go to the bathroom whenever I want. A miraculous thought for this mother and teacher.
Have a great weekend, friends!
Cody is up to rounded bolus and I've been approved to feed him that amount at home now. This weekend we will do 2 "school" meals a day and fill in the rest with his preferred foods. John is bringing up the second blender, so I can really get going on making more foods to have on hand. At school yesterday Cody told Sasha and I (without being asked) that he likes rice and strawberries! Good news! So after school yesterday I made rice to feed Cody for dinner... and he HATED it! Either I prepared it differently than they do at school, despite following the given directions, or he's confused about which food is rice. In the car today he told me rice is yellow. He may be thinking about corn or french fries. Both are yellow or yellowish in color. They don't tell him what each food is during sessions, so I think he's just guessing.
During snack session today, they assessed Cody on cup drinking. They're using something called a Flexi-Cut Cup that has an indention for your nose, so it doesn't hit your nose when you drink. He's working on drinking 2% milk right now. I think I mentioned before that we'd like him to learn to drink water, but it doesn't have much nutritional value, so they're working on milk first. He already drinks milk, but only from a soft spout sippy cup. I have to say that I was expecting a huge throw down at the cup drinking session... but Cody did amazingly well. He never got upset, although he did turn his head away from the cup the first few times. They did get him to drink the milk and found out what amount of milk per sip works well for him right now. I think his being willing to drink from the flexi-cup on the first day shows a lot of promise for him being able to drink from regular cups in the near future.
We have had a few friends leave the program since we began, which means we've had some recent additions as well. One of our new friends is a 13 year old boy from Ohio. His mom and grandmother are with him and we had a nice conversation yesterday. They are staying at the hotel we were planning to stay at before we found this condo. Over the last 2 weeks before starting the program he had only eaten McDonald's chocolate chip cookies and Tyson chicken nuggets. In the past he's had other safe foods. He's severely autistic. They told me that if they had known about the feeding program at Marcus they would have brought him years ago. His treatment program is very different from Cody. Most notably he's starting with very small bites of whole food rather than puree. His mom is also in all of his sessions with him from the beginning, unlike Cody who I was separated from until the third week. I think these differences are because of his age.
I will miss seeing Cole this weekend. He's with my parents in Albany. He will actually get to visit with some of my extended family who will be in town to see my cousin run in the Snickers Marathon. I'm sure he'll have fun and be 100% catered to. Cody will also have a great weekend with his daddy and maybe I will FINALLY have a minute alone. I might even get to go to the bathroom whenever I want. A miraculous thought for this mother and teacher.
Have a great weekend, friends!
Wednesday, February 27, 2019
Thank YOU
Cody and I were both awake before the 6:15 alarm this morning. Cody was up playing and I was up worrying. Sorry to ruin the facade that I am "so strong" and "Super Mom." I do worry quite a bit. Just ask my husband.
I am worried about feeding Cody when we return to Cairo. Don't worry. I have already asked for help understanding how to manage feeding Cody and feeding myself and the rest of the family. I am not keen on the idea of eating cold food myself every night if I feed Cody while the whole family eats dinner. I'm also not fond of the idea of feeding Cody before everyone else eats and Cody not being a part of family dinner time. I am not the first person who has done this, however, so I am confident the Marcus Center will have help and advice to offer.
I am also worried about Cole. At his last doctor's appointment he was in the 2nd percentile for height and somewhere in the teens for weight. He still wears 12 month pants, even though he'll be 2 in April. He also doesn't talk as much as I think he should. He knows words, but he doesn't communicate well for an almost 2 year old. I am not even trying to compare him to Cody who knew his alphabet before he was 2. (and I mean he really knew what each letter was out of order and everything... not just sing the ABCs) I understand that Cody's intelligence is exceptional and Cole is probably more "normal" in cognitive development. That's the other thing. Cole is smart! He's "street smart" compared to Cody's "book smart." So, I'm not really worried about him not being smart.. I just think he should be farther along in speech. I'm curious what his pediatrician will say about his size and development at his 2 year appointment. Luckily, I don't have a whole lot of time to worry about Cole right now... but it's always in the back of my mind.
Ok... what you all are really here for... how did it go at "food school" today. No surprises today. It was a fairly smooth day, although Cody and I were both tired from waking up so early. I fed Cody at breakfast. The only truly "bad" moment of the day was when Cody found out that I wasn't coming to feed him at the snack session. He had gotten used to me feeding him every time and being at every session. This was the first time in 2 days that he had to leave me. I knew it would be rough and take some time for him to get used to again. I was right. He had a bit of a fit and had to be carried away to snack session. He recovered though and was able to move up to "rounded bolus." That's just a fancy way of saying he has more food on the spoon for every bite now. Tonight I will still feed him at "leveled spoon bolus," because I haven't learned how to serve rounded bolus yet.
One of our favorite families at the Marcus Center finished treatment today! I actually never even learned their last name, but she is the lady I mentioned who has a friend who lives in Cairo. I gave her John's name and since he's Cairo-famous, I'm sure the friend will know who he is! Ha!!
After school today I got Starbucks and took Cody to the playground to play. He loves it there. I figured I better get as much use out of it as I can when it's warm enough and not raining! We've had a lot of yucky weather here. When we got home, Cody and I were surprised to find 5 packages and 2 cards!! We have some wonderful friends and family. Thank you to everyone who sent things from our wish list... and to Harper for the fun toys.
I will share a cute story about Cody to wrap up this post. So, Cody does not like to be kissed. I honestly think it's a sensory thing. He's always wiped off the spot that you kiss him! Since we've been here at Marcus, some of his sensory issues have intensified and he doesn't want me to kiss him AT ALL. Today after his nap, Cody was being extra cuddly and wanted me to kiss him, so I did! After school in the car I said, "Thank you for letting me kiss you today!" Cody replied, "Thank YOU for kissing me!" (Strong emphasis on the YOU) He's so cute. He makes me laugh everyday. He also makes me want to pull my hair out everyday. Motherhood. It's a balance.
I am worried about feeding Cody when we return to Cairo. Don't worry. I have already asked for help understanding how to manage feeding Cody and feeding myself and the rest of the family. I am not keen on the idea of eating cold food myself every night if I feed Cody while the whole family eats dinner. I'm also not fond of the idea of feeding Cody before everyone else eats and Cody not being a part of family dinner time. I am not the first person who has done this, however, so I am confident the Marcus Center will have help and advice to offer.
I am also worried about Cole. At his last doctor's appointment he was in the 2nd percentile for height and somewhere in the teens for weight. He still wears 12 month pants, even though he'll be 2 in April. He also doesn't talk as much as I think he should. He knows words, but he doesn't communicate well for an almost 2 year old. I am not even trying to compare him to Cody who knew his alphabet before he was 2. (and I mean he really knew what each letter was out of order and everything... not just sing the ABCs) I understand that Cody's intelligence is exceptional and Cole is probably more "normal" in cognitive development. That's the other thing. Cole is smart! He's "street smart" compared to Cody's "book smart." So, I'm not really worried about him not being smart.. I just think he should be farther along in speech. I'm curious what his pediatrician will say about his size and development at his 2 year appointment. Luckily, I don't have a whole lot of time to worry about Cole right now... but it's always in the back of my mind.
Ok... what you all are really here for... how did it go at "food school" today. No surprises today. It was a fairly smooth day, although Cody and I were both tired from waking up so early. I fed Cody at breakfast. The only truly "bad" moment of the day was when Cody found out that I wasn't coming to feed him at the snack session. He had gotten used to me feeding him every time and being at every session. This was the first time in 2 days that he had to leave me. I knew it would be rough and take some time for him to get used to again. I was right. He had a bit of a fit and had to be carried away to snack session. He recovered though and was able to move up to "rounded bolus." That's just a fancy way of saying he has more food on the spoon for every bite now. Tonight I will still feed him at "leveled spoon bolus," because I haven't learned how to serve rounded bolus yet.
One of our favorite families at the Marcus Center finished treatment today! I actually never even learned their last name, but she is the lady I mentioned who has a friend who lives in Cairo. I gave her John's name and since he's Cairo-famous, I'm sure the friend will know who he is! Ha!!
After school today I got Starbucks and took Cody to the playground to play. He loves it there. I figured I better get as much use out of it as I can when it's warm enough and not raining! We've had a lot of yucky weather here. When we got home, Cody and I were surprised to find 5 packages and 2 cards!! We have some wonderful friends and family. Thank you to everyone who sent things from our wish list... and to Harper for the fun toys.
I will share a cute story about Cody to wrap up this post. So, Cody does not like to be kissed. I honestly think it's a sensory thing. He's always wiped off the spot that you kiss him! Since we've been here at Marcus, some of his sensory issues have intensified and he doesn't want me to kiss him AT ALL. Today after his nap, Cody was being extra cuddly and wanted me to kiss him, so I did! After school in the car I said, "Thank you for letting me kiss you today!" Cody replied, "Thank YOU for kissing me!" (Strong emphasis on the YOU) He's so cute. He makes me laugh everyday. He also makes me want to pull my hair out everyday. Motherhood. It's a balance.
Tuesday, February 26, 2019
Home Visit
Today's home visit went really well. Cody was very excited to have his "friends" Sasha and Damarea at his house today. He showed off all of his toys, read books, did puzzles, and tickled a lot! And of course, he ate. Thankfully, he did not have a negative reaction to sitting in the booster seat or doing his "food school" work at home.
At breakfast I assisted in preparing all the food. Many of the foods require additions in order to get the right texture when preparing to eat. There are some foods you add milk or water to, some of the fruits have sugar added, and some vegetables require butter when reheating. Foods that are usually served cold are left cold and foods that are normally served hot are warmed up. Marcus is the first time Cody has eaten warm or cooked food. I learned how to properly weigh the meal tray before and after the meal to determine how many grams of food Cody consumed.
I prepared all the foods for the snack, lunch, and dinner sessions. Sasha was there to answer any questions I had and check to be sure I got the right consistency. I learned that french fries need to be heated a couple extra times before they will break down to puree again. They get really clumpy. I also learned that gluten free chicken nugget puree smells horrendous. I hope I can get that smell out of my nose some day. I'm sure John will be horrified by the pea puree, since he hates peas. I have to say... I'm not willing to eat anything on Cody's tray! But, thankfully, he eats it without much complaint.
I took data on all 4 sessions and had to include several gags and one negative statement. I think all of the gags were on grits. (In my opinion that's because they were prepared without salt or butter! ha!) Before lunch Cody got really upset after trying to color his Build-a-Bear Box. He has poor motor skills and his drawing wasn't what he wanted it to be. He had a total meltdown knowing the marker couldn't be fixed or taken off the box. We had to ignore him and go on with the session. The Kindle really helped calm him down, but it was a rougher start than usual.
Just to give you some idea about how tedious each meal is. Here is what happens:
Give a toy choice.
Get appropriate amount of food 1 on spoon.
Say, "Take a bite."
Cody takes bite.
Say, "Good job taking that bite!"
Set 30 second timer.
Prepare appropriate amount of food 2 on spoon.
Engage with Cody.
When the timer goes off, say, "Show me."
Cody opens his mouth to show he swallowed the food.
Say, "Good job, swallowing!"
Say, "Take a bite."
Cody takes a bite of food 2.
Set timer...
Repeat for 50-60 bites rotating 4 foods. The toy choice happens at least one more time during the meal.
Today we went up to 60 bites at one meal. His goal of grams to consume right now is 205, plus or minus 10. He went to 215 grams at his last meal today. It's great! I'm so glad he's eating nutritious foods. But LORD it's tedious. I imagine John having a very hard time with the process, because he's not as patient as I am. He would do anything for Cody, though, and knows this process his helping him. The part I think my mom will struggle with is ignoring him when he acts out or makes negative statements.
Our homework for tonight is to serve a "food school" meal for dinner rather than his usual meal of crunchies, green applesauce, and Paw Patrol yogurt. He had green applesauce for a snack earlier, so I went ahead and snuck his medicine into it. Our meal tonight only has to last 40 minutes or 40 bites. For us, 40 bites will be a lot shorter than 40 minutes. In fact... I'm going to go prepare our dinners right now. Have a great night, friends. And thanks for the comments. I love reading them.
At breakfast I assisted in preparing all the food. Many of the foods require additions in order to get the right texture when preparing to eat. There are some foods you add milk or water to, some of the fruits have sugar added, and some vegetables require butter when reheating. Foods that are usually served cold are left cold and foods that are normally served hot are warmed up. Marcus is the first time Cody has eaten warm or cooked food. I learned how to properly weigh the meal tray before and after the meal to determine how many grams of food Cody consumed.
I prepared all the foods for the snack, lunch, and dinner sessions. Sasha was there to answer any questions I had and check to be sure I got the right consistency. I learned that french fries need to be heated a couple extra times before they will break down to puree again. They get really clumpy. I also learned that gluten free chicken nugget puree smells horrendous. I hope I can get that smell out of my nose some day. I'm sure John will be horrified by the pea puree, since he hates peas. I have to say... I'm not willing to eat anything on Cody's tray! But, thankfully, he eats it without much complaint.
I took data on all 4 sessions and had to include several gags and one negative statement. I think all of the gags were on grits. (In my opinion that's because they were prepared without salt or butter! ha!) Before lunch Cody got really upset after trying to color his Build-a-Bear Box. He has poor motor skills and his drawing wasn't what he wanted it to be. He had a total meltdown knowing the marker couldn't be fixed or taken off the box. We had to ignore him and go on with the session. The Kindle really helped calm him down, but it was a rougher start than usual.
Just to give you some idea about how tedious each meal is. Here is what happens:
Give a toy choice.
Get appropriate amount of food 1 on spoon.
Say, "Take a bite."
Cody takes bite.
Say, "Good job taking that bite!"
Set 30 second timer.
Prepare appropriate amount of food 2 on spoon.
Engage with Cody.
When the timer goes off, say, "Show me."
Cody opens his mouth to show he swallowed the food.
Say, "Good job, swallowing!"
Say, "Take a bite."
Cody takes a bite of food 2.
Set timer...
Repeat for 50-60 bites rotating 4 foods. The toy choice happens at least one more time during the meal.
Today we went up to 60 bites at one meal. His goal of grams to consume right now is 205, plus or minus 10. He went to 215 grams at his last meal today. It's great! I'm so glad he's eating nutritious foods. But LORD it's tedious. I imagine John having a very hard time with the process, because he's not as patient as I am. He would do anything for Cody, though, and knows this process his helping him. The part I think my mom will struggle with is ignoring him when he acts out or makes negative statements.
Our homework for tonight is to serve a "food school" meal for dinner rather than his usual meal of crunchies, green applesauce, and Paw Patrol yogurt. He had green applesauce for a snack earlier, so I went ahead and snuck his medicine into it. Our meal tonight only has to last 40 minutes or 40 bites. For us, 40 bites will be a lot shorter than 40 minutes. In fact... I'm going to go prepare our dinners right now. Have a great night, friends. And thanks for the comments. I love reading them.
Monday, February 25, 2019
Mommy's Turn
Quick update from Friday:
Not many changes were made. All 16 foods have been introduced and accepted at level spoon bolus. The next step is training Mommy.
We had a nice visit with my aunt, Nancy (Cody's great-aunt). I think she enjoyed her behind the scenes visit and getting to play with Cody. Cody really enjoyed playing with her.
Not many changes were made. All 16 foods have been introduced and accepted at level spoon bolus. The next step is training Mommy.
We had a nice visit with my aunt, Nancy (Cody's great-aunt). I think she enjoyed her behind the scenes visit and getting to play with Cody. Cody really enjoyed playing with her.
John and Cole made really good time and got here around 5:30. Cody was excited to see them and Cole just wanted to check out the new place. The boy loves to explore. We made tacos at the apartment and hung out together until bedtime. Sleeping was interesting with two toddlers and two adults sleeping in one room. I don't think I got any sleep. Anytime someone made a noise I was sure it would wake someone else up. We managed.
Saturday morning we went to a place called SnipIts in Sandy Springs that specializes in haircuts for children with autism or sensory processing disorder. We had to wait longer than we would have liked, because they were understaffed. In the end, both boys successfully had their haircut without too much headache.
After haircuts we went to the 2-story Target near Phipps/Lenox. We witnessed a dad and his two little boys riding the escalator up and down over and over. There's a special escalator for the shopping carts, which Cody and the other boys were especially enamored with. Once we finished at Target, we came back to the apartment for Cole's nap. I think there may have been a few moments that only Cody was awake actually.
After naps we went to Marietta for play time and dinner with John's brother's family. It started out horribly as Cody was super grumpy from a short car nap and Cole just wanted to go up and down their stairs. Cody came around, though, and it ended up being a nice evening with family. We came home early enough for everyone to get a bath before bed. I confess.. I slept on the couch Saturday night, because I couldn't deal with another sleepless night in the crowded bedroom.
Sunday morning John got us doughnuts from Dunkin', then we went grocery shopping at Kroger. As I mentioned, a lot of the foods I need to prepare for Cody are Kroger brand. Cody refused to ride in the cart with Cole, so we drove two grocery carts around and managed to find most of what we needed without too much fuss. After a quick lunch it was time for John and Cole to leave. Needless to say, I was extremely sad to see them go, especially knowing they were not planning to come back for 3 weeks. But I didn't have a whole lot of time to sit around and be sad, because I had to prepare purees for Monday's "inspection." It was the first sunny, warm day in awhile, so we opened up the balcony door and Cody had fun playing in and out while I worked in the kitchen. Don't worry. I could see him at all times and Cody wasn't in danger. It helped a lot for him to be able to go on the balcony while I cooked, because he HATED the blender sounds. He already hates vacuums and dust busters, so this was no surprise. He got more comfortable as the afternoon went on. Washing the blender by hand in between foods was not all that fun. I have started wondering if you can buy extra pitchers for the blender. That would be nice to have. This picture is pineapple, oatmeal, and string cheese puree (from left to right). I also made broccoli with cheese sauce.
After enduring the sounds of the blender, Cody deserved play time at the awesome playground in our neighborhood. This was our first chance to play there and Cody loved it! He didn't know what to expect when I said we were going to a new playground and he was very surprised by how big it was. We returned home to watch Paw Patrol and Cody fell asleep on the floor. I ordered in and the weekend came to a close.
Monday came and "food school" was back in session with a very special surprise for Cody-- Mommy came to every session! The therapist started the first session just to be sure there were no major changes over the weekend, then I was invited in. At first my only job was to say "good job taking that bite!" after each bite was accepted and "good job swallowing!" after every mouth check. I was also taught how to engage Cody during the sessions, which was a little tricky. I'm used to asking Cody a lot of questions, guiding the conversation etc. The protocol at Marcus, however, is to allow the child to lead. You can use descriptive language to make comments about the DVD you're watching or comment on the toy you're playing with, but you're discouraged from asking open ended questions. They feel they are already asking the child to do so much, you are not to add more to it by asking for answers to questions or guiding the play your direction. Don't place any added demands on the child, even to answer a simple question. This was a bit tricky for me at first, but I got the hang of it pretty much. It was easier as the day went on, because I became a lot busier. At the next session I moved up and sat in the "driver's seat," so to speak. There I learned how to get the right amount of food on the spoon, how to deliver each bite, give the verbal prompt (take your bite), start and stop the timer, and give the verbal prompt for mouth check (show me). Basically, at that point I was doing it all, except collecting data. At the last meal session, I did start collecting data, but pretty basic stuff. I checked off if he accepted the bite within 5 seconds and if his mouth was "clean" after 30 seconds (swallowed food). If he had gagged or had negative statements or behavior, I would have also checked those. One other thing that happens during the meal is toy choice. At the beginning of the session and after every 25 or so bites you choose two toys, show them to Cody, and ask him to choose which one he wants. Right now Cody gets his toy for the entire time he's eating.
I think Cody really enjoyed my being with him at each session and now I'm a little worried for the next time I'm not allowed in. When we started here I really thought he might struggle with accepting bites from me. But honestly they've trained him SO well to take the bites, that he's like a trained robot. He doesn't even think about it or consider what's on the spoon. He just eats it. Speaking of which, no Cody does not know what he's eating. From time to time he's heard me telling another adult what he ate in session and he will adamantly deny that he ate that food. Over the weekend when he saw me making his food for school and putting it into the small containers, he asked me about it. I told him I was making food for food school. He asked what was in one container and I told him cheese. He said, "oh! Damarea loves that kind!" :)
Evidently, I was a star student today and they were able to complete my training in one day rather than two. That means that they were able to move the home visit up from Wednesday to tomorrow. I also, evidently, had no idea what a home visit was. I thought they would come by after "school," check out our set up, help us with a meal, and be done. NOPE! They're coming bright and early tomorrow morning at 8:30 and will be doing all four meal sessions at our apartment. They will leave during the long break after lunch, however, and come back for the final meal. This is why they needed all 16 foods prepared for the home visit. He'll need enough food here for 4 meals. I prepared 8 of the foods (by the way, the inspection of my prepared foods this morning went fine despite John telling me I was going to get chopped!). They sent portions of the other 8 foods home with me today, so we'll have them for tomorrow. We had to get a booster seat like they one they use at food school. Cody saw it tonight and made it clear that he did NOT want it, so hopefully that won't be awful tomorrow. He doesn't sit in a booster at home anymore.
John decided today that he'll leave Cole with my parents on Friday and come visit us by himself this weekend instead of waiting 3 weeks. It was really hard on Cole's schedule this weekend with all the traveling and weird sleeping arrangements, so I agree with leaving him in Albany. Although it does make me sad not to see him for so long. It's only a few weeks.
Be on the lookout tomorrow for a post on our home visit. Goodnight.
Thursday, February 21, 2019
Two for One
Wednesday & Thursday. Both days Cody has been saying "it's the last day of the week!" Somebody's looking forward to Friday, I think. We both are! John and Cole were able to work it out to get up here Friday evening, so we'll finally be all together again. Hopefully Cole will remember me.
I'm sorry for not updating yesterday. I probably should have, because now I am struggling to remember everything that happened. I guess I'll just give the highlights of the last two days. This might get long. Hopefully you'll hang in there.
On Wednesday morning I received my food prep manual with instructions and recipes for Cody's 16 foods he's eating in treatment. I was also sent a list of supplies for feeding. Over the weekend I will need to prepare several of the foods from the manual and bring them in for "inspection" on Monday, just to be sure I get the right consistency. Next week I will be trained by the doctor on feeding Cody myself. Wednesday of next week a therapist will visit us at our apartment here in Atlanta to help us with our first home feeding. After that I'll begin feeding Cody each night the foods that he has in treatment. I learned today that on Wednesday they'll need all 16 of Cody's foods prepared. I will make as many as I can and they will provide the rest. The 16 foods are: beef stew (prepackaged mini bowls), string cheese, gluten free chicken tenders, hot dog, french fries, grits, apple cinnamon oatmeal, instant white rice, peaches, pears, pineapple, strawberries, broccoli in cheese sauce, carrots, corn, and peas. Those are four foods from each group (proteins, starches, vegetables, fruit). I am not sure if they've added carrots yet, but I think he's had everything else already. I wish I could post the "recipe" for blending each of these foods into a puree, because it's very interesting. Because I know you're curious now, I'll give you a taste with one recipe-
I'm sorry for not updating yesterday. I probably should have, because now I am struggling to remember everything that happened. I guess I'll just give the highlights of the last two days. This might get long. Hopefully you'll hang in there.
On Wednesday morning I received my food prep manual with instructions and recipes for Cody's 16 foods he's eating in treatment. I was also sent a list of supplies for feeding. Over the weekend I will need to prepare several of the foods from the manual and bring them in for "inspection" on Monday, just to be sure I get the right consistency. Next week I will be trained by the doctor on feeding Cody myself. Wednesday of next week a therapist will visit us at our apartment here in Atlanta to help us with our first home feeding. After that I'll begin feeding Cody each night the foods that he has in treatment. I learned today that on Wednesday they'll need all 16 of Cody's foods prepared. I will make as many as I can and they will provide the rest. The 16 foods are: beef stew (prepackaged mini bowls), string cheese, gluten free chicken tenders, hot dog, french fries, grits, apple cinnamon oatmeal, instant white rice, peaches, pears, pineapple, strawberries, broccoli in cheese sauce, carrots, corn, and peas. Those are four foods from each group (proteins, starches, vegetables, fruit). I am not sure if they've added carrots yet, but I think he's had everything else already. I wish I could post the "recipe" for blending each of these foods into a puree, because it's very interesting. Because I know you're curious now, I'll give you a taste with one recipe-
French fries, frozen (Brand: Kroger)
Cook using package directions. Blend 150 g of french fries with 6 oz of whole milk and 3 tsp of ketchup until smooth.
Earlier in the manual it explains how you should first blend the dry or whole ingredients first (cooked french fries), then add the additional ingredients (ketchup), and gradually add in the liquid and continue to blend until the desired consistency is achieved. The consistency should resemble plain yogurt in both texture and thickness.
There are also really specific instructions for reheating foods and which not to freeze. Foods can be stored in the fridge for 3 days or frozen for 30 days. Obviously three of the most important things I had to purchase were a blender, a food scale, and the little plastic tupperware cups to store and serve foods in. I honestly wish I could post the whole manual on here, because I know so many of you would be interested in reading all of these "recipes." If you want to know more about the process, email or message me.
As you may have seen on Facebook or noticed in this post, a lot of the foods used to prepare Cody's purees are Kroger brand. The Kroger closest to Cairo is 2.5 hours away. Of course, I initially freaked out and wondered how in the word we could manage that. Then I started getting rational about the whole thing. Kroger does ship items that are not cold, which is 5 of the 16 items. Five items I can buy locally (not Kroger brand). That leaves 6 cold or frozen items that can only be purchased AT Kroger. I began picturing a deep freezer (which we will probably still get) and monthly trips to Perry to purchase the 6 frozen and cold foods Cody needs. It's not actually that big of a deal, since we will be making outpatient trips up here regularly for therapy either bi-weekly or monthly. However, I knew the best thing to do was to bring it up in Cody's goal meeting and see how this problem could be helped. I will get to the meeting later in the post, but we did come up with a potential solution to the Kroger problem. We plan to try to transition Cody from Kroger brand items to national brand products available at Publix or Walmart before he leaves treatment (hopefully sooner rather than later) to ensure that the brand switch doesn't negatively affect his progress. I can totally see how some products could be slightly different and that could affect the recipe for puree and could affect the taste, especially for someone as sensitive to new tastes as Cody. For many of us, a french fry is a french fry is a french fry, but for someone like Cody who has eaten the same exact 5 foods for 2.5 years with no brand or flavor variation, two french fries could taste very different. String cheese is a food he eats now that I see a lot of variation in myself. I like Sargento light string cheese, but the texture and taste of that cheese is very different from Kraft. I'm going to do everything I possibly can to ensure that Cody continues to make progress, even if it means driving to Kroger until we can transition him to products that are locally available. I didn't come this far to say no sorry we can't provide those items for Cody. We have shown that we will do absolutely anything to help Cody, including turning our lives upside down to be here. Driving to Perry is a drop in the bucket.
Moving on...
Late yesterday afternoon I received a call from the Marcus Center to schedule Cody's evaluation for Autism Spectrum Disorder. I have met more than one person up here who refuses to believe Cody could be on the spectrum... but those people are not medical professionals. Sometimes I'm convinced he's neuro-typical and other times I think he could be on the spectrum but very, very high-functioning. I do think Sensory Processing Disorder explains a lot of his behaviors. I think he could also have anxiety. I don't think he's OCD enough for a diagnosis, but has an OCD personality (like his dad). His evaluation will be March 19 during his 2 hour afternoon break from feeding treatment. That will be a busy day for him, especially since that's normally his naptime. Moms at the center have told me how much they love Cody's personality and are astounded by his vocabulary and how conversational he is. He makes people laugh everyday. I've been impressed with how well he has shared with other kids. He has really improved in the last year.
I guess the next big highlight was Cody's goal meeting that was this morning. Cody's whole team attended the meeting (except the SLP, because she was out of the office) and we had John on speakerphone, so he could listen in and ask questions. They showed me lots of data they've collected on Cody, so far. I won't bore you with details, but it shows a huge increase in food acceptance and amount of food intake. There is a huge decrease in negative behaviors occuring during treatment. So that means everything is going really well! The nutritionist spoke about our goal for Cody being adding new foods to his diet to make up for nutritional deficiencies he's currently experiencing. The goal is to get Cody eating as many different kinds of foods as possible. Eventually the goal will be to get Cody to different textures, but they predict he will still be on puree when he leaves treatment. They did not give me much hope that he will finish treatment early despite his excellent, consistent progress. Eight weeks is the average amount of weeks kids stay, but the number is flexible. They could add a week or take back a week from his treatment, but all of that waits to be seen. Keep praying we make it to the beach for Spring Break!! Another hurdle we face is finishing out this year in daycare and attending school for the foreseeable future. Cody does not feed himself and will not be feeding himself anytime soon. Actually I finally got him to start feeding himself with a spoon at home over the summer and now he's majorly regressed, probably due to being spoon fed at treatment. Anyway..ideally, Cody would have someone from his school trained at the Marcus Center on how to feed Cody and that person would feed Cody one-on-one each day at school. Obviously, we're not in an ideal situation. I don't even know where Cody will be for school next year. It will be great when Cody is in public school and can have an IEP. With an IEP, the school will be required to provide whatever Cody needs. For now, I just don't know. I'll talk more with the nutritionist about what to do. For now that's just up in the air and definitely another situation you can pray about.
We continue to be blessed by so many friends near and far. We receive cards daily and even packages sometimes. We are so thankful for all the gifts as well as the prayers. We have an extremely supportive church family at both Cairo FUMC and Porterfield that is taking care of so many of our needs. John has been well-fed many nights by a kind neighbor. People keep asking me how they can help. I don't have much to ask for, but I did make a small wish list on Amazon for the things we need for feeding Cody coming up. I feel bad making the list, because we CAN provide for Cody ourselves, but I know so many people want to help us. We don't want to do GoFundMe or anything, but I need to have some way that I can allow people to help us the way they've asked to. I hope people see the list that way and not like I'm begging for gifts.
I believe those are all the highlights from the last two days. I'm definitely leaving out all the details of bad moods, meltdowns, rain, no playground time, etc. Cody continues to take this all in stride, but he is a 3.5 year old boy. It's trying at times, but I know we are where we need to be.
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