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.
Wednesday, February 27, 2019
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.
Tuesday, February 19, 2019
Rainy Tuesday
It's almost bathtime, so I will make this short. Today was a little rough, because Cody wasn't in a great mood all the time. He had good moments and bad moments. The worst was in his oral motor skills session today. I actually don't think he was upset by any of the actual things she was asking him to do (chew, rub gums, etc). I think he was just in a bad mood and got set off by something I said about our cats at home. It was downhill from there. He added beef stew to his food rotation today with no problems. He didn't love that it's raining today. We didn't get to go outside and play on the playground. Some of the other kids were "off" today too and that didn't help in the playroom. Perhaps everybody was feeling the effects of the weather.
I've made actual dinners for myself the last two nights and while the eating is good, there's no one here to make my dirty dishes disappear like there is at home. Cole went back to school today. Boss had cataract surgery today and didn't throw shoes at my mom like I did when I had cataract surgery. Long story. Cody got a package in the mail from my sister. It looked to be about the size of a book and Cody's guess was that is was a huge Paw Patrol toy he wants to get! :) We also got a card from a sweet friend in Albany.
There's rain in the forecast for the rest of the week. Stay tuned for more meltdowns.
I've made actual dinners for myself the last two nights and while the eating is good, there's no one here to make my dirty dishes disappear like there is at home. Cole went back to school today. Boss had cataract surgery today and didn't throw shoes at my mom like I did when I had cataract surgery. Long story. Cody got a package in the mail from my sister. It looked to be about the size of a book and Cody's guess was that is was a huge Paw Patrol toy he wants to get! :) We also got a card from a sweet friend in Albany.
There's rain in the forecast for the rest of the week. Stay tuned for more meltdowns.
Monday, February 18, 2019
Monday
Saturday: Cody and I got up pretty early and were excited to find out my dad was feeling well enough to come up. We hung around the apartment not really doing much of anything. My parents arrived around 11:30. Cody was SO excited to see them and even more excited about the fun surprises they brought for him. I managed to get Cody to eat some lunch before we headed off to Zoo Atlanta. Cody had so much fun at the zoo, but couldn't be bothered to stop too long to look at the animals. Ha! He examined his map and decided he wanted to see the pandas. He got there, took one look at the real pandas, and said "now let's get a stuffed panda!" It's all about the gift shop, really. I was proud of him for riding the train, since it had some loud and "scary" moments. He got really tired and hungry as the day went on and that equals GROUCHY! But it was ok and we made it back to the apartment without any terrible meltdowns.
We decompressed at the apartment for awhile, then headed out to Phipps to take Cody to Build-a-Bear! We were not expecting them to have Paw Patrol "bears" but as soon as he saw them, we knew we were getting Chase! Cody took almost all the "upgrades" available and walked out with his very own Chase, complete with Birth Certificate. His second favorite part of Phipps was riding his first escalator!
Saturday night my parents took Cody to stay with them at the Omni downtown. Cody was delirious when we left the mall, so it was no surprise that he fell asleep in the car and didn't really wake up until the next morning.
My parents claimed they would be bringing him back to the apartment Sunday morning and would bring bagels for breakfast, but they didn't arrive until after 11, so it was more like brunch! They left soon after. Cody was sad to see them go and later said he wanted to go with Boss and CC. My favorite part of Sunday was convincing Cody to watch movies all day rather than Fizzy Fun Toys! We watched Frozen, Curious George (the movie), Toy Story 3, and Charlotte's Web. Cody slept through most of Frozen and lost interest in Charlotte's Web, but it was still better than FFT.
Monday: Today was pretty "normal." Shout out to Ed Lyon for visiting me at the Marcus Center this morning and bringing two boxes of "monkey yogurt" for Cody! He even got a tour and insider's view of "food school" and it was nice to see a familiar face for a few minutes. Today they added peaches and apple cinnamon oatmeal to Cody's food rotation. From what I saw and heard, Cody did really well with the additions. I didn't stay for the end of his last "meal" because it was going well while I was there. So I was surprised to hear that Cody threw up a little while I was gone. I'm not at all sure about what happened, because he hasn't been gagging on the food or anything. I'm sure we'll talk more about this tomorrow, since it happened right at the end of the day. The nutritionist came by this morning and asked me not to give Cody any additional snacks this morning between breakfast and lunch. He already eats breakfast before he leaves the house, then has his breakfast session at 8:45 and snack session at 10:15. They feel like he is now getting a large enough amount of food there to cut out an additional snack of "safe foods" between sessions. Cody didn't ask for anything until 5 minutes before his snack session, so I was able to put him off. There's no update yet on when I'll be trained and when he'll start eating new foods at home. I hope they give me plenty of time to prepare, because I will need at least one blender!
This morning John and I were talking about him coming to Atlanta this Friday with Cole. He was planning to leave before lunch, so that he could beat the traffic getting here. Unfortunately, I don't think that plan is going to work, because he remembered he has something going on with the band on Friday. So... we'll see.
After "school" today Cody and I went to Publix. He refused to ride in the buggy, so it took 20 times longer. I decided that grocery delivery might be worth the extra money after all. BUT he did look super cute pushing the buggy, so there's that...
For all those worried about my dad and Cole- both of them are feeling ok. They haven't found the cause of what's going on with my dad. He'll need more testing. Cole has been with my mom since yesterday afternoon, because his babysitter took off for President's Day. Grady Co Schools were not out, so John needed a babysitter. Mom says he doesn't have a fever anymore and has been playing much more today. He'll be back at daycare tomorrow.
Have a great evening!
We decompressed at the apartment for awhile, then headed out to Phipps to take Cody to Build-a-Bear! We were not expecting them to have Paw Patrol "bears" but as soon as he saw them, we knew we were getting Chase! Cody took almost all the "upgrades" available and walked out with his very own Chase, complete with Birth Certificate. His second favorite part of Phipps was riding his first escalator!
My parents claimed they would be bringing him back to the apartment Sunday morning and would bring bagels for breakfast, but they didn't arrive until after 11, so it was more like brunch! They left soon after. Cody was sad to see them go and later said he wanted to go with Boss and CC. My favorite part of Sunday was convincing Cody to watch movies all day rather than Fizzy Fun Toys! We watched Frozen, Curious George (the movie), Toy Story 3, and Charlotte's Web. Cody slept through most of Frozen and lost interest in Charlotte's Web, but it was still better than FFT.
Monday: Today was pretty "normal." Shout out to Ed Lyon for visiting me at the Marcus Center this morning and bringing two boxes of "monkey yogurt" for Cody! He even got a tour and insider's view of "food school" and it was nice to see a familiar face for a few minutes. Today they added peaches and apple cinnamon oatmeal to Cody's food rotation. From what I saw and heard, Cody did really well with the additions. I didn't stay for the end of his last "meal" because it was going well while I was there. So I was surprised to hear that Cody threw up a little while I was gone. I'm not at all sure about what happened, because he hasn't been gagging on the food or anything. I'm sure we'll talk more about this tomorrow, since it happened right at the end of the day. The nutritionist came by this morning and asked me not to give Cody any additional snacks this morning between breakfast and lunch. He already eats breakfast before he leaves the house, then has his breakfast session at 8:45 and snack session at 10:15. They feel like he is now getting a large enough amount of food there to cut out an additional snack of "safe foods" between sessions. Cody didn't ask for anything until 5 minutes before his snack session, so I was able to put him off. There's no update yet on when I'll be trained and when he'll start eating new foods at home. I hope they give me plenty of time to prepare, because I will need at least one blender!
This morning John and I were talking about him coming to Atlanta this Friday with Cole. He was planning to leave before lunch, so that he could beat the traffic getting here. Unfortunately, I don't think that plan is going to work, because he remembered he has something going on with the band on Friday. So... we'll see.
After "school" today Cody and I went to Publix. He refused to ride in the buggy, so it took 20 times longer. I decided that grocery delivery might be worth the extra money after all. BUT he did look super cute pushing the buggy, so there's that...
For all those worried about my dad and Cole- both of them are feeling ok. They haven't found the cause of what's going on with my dad. He'll need more testing. Cole has been with my mom since yesterday afternoon, because his babysitter took off for President's Day. Grady Co Schools were not out, so John needed a babysitter. Mom says he doesn't have a fever anymore and has been playing much more today. He'll be back at daycare tomorrow.
Have a great evening!
Friday, February 15, 2019
Disappointment
Most people reading this blog are already my Facebook friends, so you know what I'm about to say. I didn't think I'd be writing tonight, because I thought we would be out with my parents and then waiting on John and Cole to arrive later. Unfortunately, nobody is here! Cole's babysitter texted this morning that Cole had a fever. John took him to the doctor this afternoon (not this morning as I wanted him to) and Cole has the flu. So obviously they cannot come up here and infect us with the flu, so they'll have to stay in Cairo. Fingers crossed that they will be able to come next weekend. It has already been 1.5 weeks since we saw them. Cody is missing his Daddy and asked him on the phone tonight if he could come. It was pitiful. And poor baby Cole. I just want to be there to take care of him. I know John is capable... but all you moms out there know how I feel. So why aren't my parents here? Well, my dad had some sort of of "episode" on the way up here today and had to be taken by EMS to Phoebe. He was having these "episodes" before and I'm not sure they ever really figured out what they were. Mom says that they'll decide in the morning if they're able to come up or not. Knowing my dad, he'll still try to come even if he shouldn't. I hope Mom is able to convince him to stay home if he needs to. We don't need any ambulance rides or more complications! So... to say the least I am very disappointed. I'm sad about not seeing Cole. I am nervous about entertaining Cody all weekend again. I am angry about having to watch Fizzy Fun Toys over and over again. I am exhausted from the week. But... we will make it.
Everybody at "food school" is in awe of the progress Cody has made so far. One of the therapist told me that he is progressing as quickly as he could. Today he made it to a full level spoon, which is where they will keep him for awhile. Monday they will begin introducing more of the foods we chose for him. I think peaches is first on the list. Yuck... but I'm weird. Peaches was not my first choice from the fruit list, but it was one of the only ones we could choose, because they add wheat to some of the others when they puree it.The smell of peaches makes me want to vomit. I hope Cody is not like me! Cody also loosened up a bit today and talked a lot more in his sessions. I think he likes having therapy with Sasha better than Damarea. I don't know why, but she does have more experience. During one of his sessions, I was taken to the kitchen to be trained on how to prepare two of Cody's new foods. I learned how to make gluten free chicken nugget puree and strawberry puree. Both were equally disturbing to me, since I hate fruit. But as long as I don't have to eat either of them myself, I think I'll be ok. Next week I'll be given a manual with instructions on making all of the foods Cody is eating. In the next two weeks I will be trained on how to feed Cody and I'll begin feeding him at home. I think one or two days a therapist comes to your house to help you with the first home feedings. I guess they'll still do that even though our "house" isn't our REAL house.
Today I connected with another mom who is at Marcus with her second child to go through the program. I cannot even imagine. Her children had very different issues and reasons for going through the feeding program, though. Her husband is super involved and I've actually seen him there more than her. She was in the kitchen being trained on preparing purees with me today. Her husband has already been trained and has been making the food at home. I noticed her son was wearing a Florida State shirt and remembered her husband had one on earlier in the week. Turns out she went to FAMU, but her husband is a huge FSU fan. I told her I lived very close to Tallahassee and to my surprise, one of her closest college friends is from Cairo! She's the first person I've met that has even heard of Cairo.
I think that's all for today. Keep us in your prayers, folks. We surely need them right now.
Everybody at "food school" is in awe of the progress Cody has made so far. One of the therapist told me that he is progressing as quickly as he could. Today he made it to a full level spoon, which is where they will keep him for awhile. Monday they will begin introducing more of the foods we chose for him. I think peaches is first on the list. Yuck... but I'm weird. Peaches was not my first choice from the fruit list, but it was one of the only ones we could choose, because they add wheat to some of the others when they puree it.The smell of peaches makes me want to vomit. I hope Cody is not like me! Cody also loosened up a bit today and talked a lot more in his sessions. I think he likes having therapy with Sasha better than Damarea. I don't know why, but she does have more experience. During one of his sessions, I was taken to the kitchen to be trained on how to prepare two of Cody's new foods. I learned how to make gluten free chicken nugget puree and strawberry puree. Both were equally disturbing to me, since I hate fruit. But as long as I don't have to eat either of them myself, I think I'll be ok. Next week I'll be given a manual with instructions on making all of the foods Cody is eating. In the next two weeks I will be trained on how to feed Cody and I'll begin feeding him at home. I think one or two days a therapist comes to your house to help you with the first home feedings. I guess they'll still do that even though our "house" isn't our REAL house.
Today I connected with another mom who is at Marcus with her second child to go through the program. I cannot even imagine. Her children had very different issues and reasons for going through the feeding program, though. Her husband is super involved and I've actually seen him there more than her. She was in the kitchen being trained on preparing purees with me today. Her husband has already been trained and has been making the food at home. I noticed her son was wearing a Florida State shirt and remembered her husband had one on earlier in the week. Turns out she went to FAMU, but her husband is a huge FSU fan. I told her I lived very close to Tallahassee and to my surprise, one of her closest college friends is from Cairo! She's the first person I've met that has even heard of Cairo.
I think that's all for today. Keep us in your prayers, folks. We surely need them right now.
Thursday, February 14, 2019
Happy Valentine's Day
I'm getting a late start to writing today. I'm so tired, but I figured I better post now since I probably won't over the weekend.
Today Cody's bite size went up two times! He's now on a 1/2 size bite! 1/2 of what, you say? I have no idea. But it's significantly more than the rice size bites he began with. They are randomly rotating the 8 foods serving 4 at any given meal. The nutritionist came by today to check on how Cody is eating outside of therapy. He is currently having breakfast, morning snack, lunch, afternoon snack, and dinner outside of therapy sessions. If he continues to go up in bite size, they will cut out his morning snack and he will just have his bites in snack session. He was also seen by the PA today. It's nice to have medical staff available whenever we need them!
Today was the first day of Week 2 for us. One week down! In a lot of ways, it went by really quickly. But at some moments, especially over the weekend, it seemed like the time was passing so slowly.
Cody and I are both looking forward to all of our visitors this weekend. Cody has big plans to hunt for a special Marshall toy (Paw Patrol) with Boss and CC. They are also planning a trip to Build a Bear! I'm looking forward to spending time with Cole, since this is the longest I've been away from him.
Cody was really excited this morning when I woke him up and told him it was Valentine's Day. He immediately told me Happy Valentine's Day! He got a new stuffed puppy, who he named Brownie. I showed him the valentine cards I put together for him to take to all his "friends" at Marcus today. I put names on some and left some blank for folks we ran into. The first person we gave a valentine to was the lady who checks us in each morning at the desk. She was so surprised! After that Cody was so excited to give each person their valentine. His cuteness was on full display today. One of the other kids has spanish-speaking grandparents with him each day. The little boy picked up Cody's parachute toy instead of his own. The grandmother asked Cody in broken English if the blue parachute was ok with him. That prompted me to get Cody to perform his "trick" for the grandparents saying blue, red, green, one, two, and three in Spanish! They were either super impressed or just thought he was super cute.. maybe both.. because they clapped and smiled a lot for Cody's "performance." This morning I pulled the old "the playground's closed" trick when it was still 45 degrees when he wanted to go out. Of course, immediately after his last session he asked, "Is the playground open now??" We played on the playground for awhile after "school," then came home to find a card from a special friend and a Valentine's package from CC! Cody has had a fantastic Valentine's Day.
I want to say thank you to everyone who is following along with our story. And thanks for being angry with Facebook for taking my links down! It seems that the problem has been resolved and I'll probably never know why it was taken down to begin with! I'm just glad to have any easy way to keep everybody caught up on Cody's progress. I also hope that there are a few people reading that have a child like Cody and are wondering what treatment might look like. I was so confused before we came here and would have appreciated a blog like this giving details about the process.
Happy Valentine's Day!
Today Cody's bite size went up two times! He's now on a 1/2 size bite! 1/2 of what, you say? I have no idea. But it's significantly more than the rice size bites he began with. They are randomly rotating the 8 foods serving 4 at any given meal. The nutritionist came by today to check on how Cody is eating outside of therapy. He is currently having breakfast, morning snack, lunch, afternoon snack, and dinner outside of therapy sessions. If he continues to go up in bite size, they will cut out his morning snack and he will just have his bites in snack session. He was also seen by the PA today. It's nice to have medical staff available whenever we need them!
Today was the first day of Week 2 for us. One week down! In a lot of ways, it went by really quickly. But at some moments, especially over the weekend, it seemed like the time was passing so slowly.
Cody and I are both looking forward to all of our visitors this weekend. Cody has big plans to hunt for a special Marshall toy (Paw Patrol) with Boss and CC. They are also planning a trip to Build a Bear! I'm looking forward to spending time with Cole, since this is the longest I've been away from him.
Cody was really excited this morning when I woke him up and told him it was Valentine's Day. He immediately told me Happy Valentine's Day! He got a new stuffed puppy, who he named Brownie. I showed him the valentine cards I put together for him to take to all his "friends" at Marcus today. I put names on some and left some blank for folks we ran into. The first person we gave a valentine to was the lady who checks us in each morning at the desk. She was so surprised! After that Cody was so excited to give each person their valentine. His cuteness was on full display today. One of the other kids has spanish-speaking grandparents with him each day. The little boy picked up Cody's parachute toy instead of his own. The grandmother asked Cody in broken English if the blue parachute was ok with him. That prompted me to get Cody to perform his "trick" for the grandparents saying blue, red, green, one, two, and three in Spanish! They were either super impressed or just thought he was super cute.. maybe both.. because they clapped and smiled a lot for Cody's "performance." This morning I pulled the old "the playground's closed" trick when it was still 45 degrees when he wanted to go out. Of course, immediately after his last session he asked, "Is the playground open now??" We played on the playground for awhile after "school," then came home to find a card from a special friend and a Valentine's package from CC! Cody has had a fantastic Valentine's Day.
I want to say thank you to everyone who is following along with our story. And thanks for being angry with Facebook for taking my links down! It seems that the problem has been resolved and I'll probably never know why it was taken down to begin with! I'm just glad to have any easy way to keep everybody caught up on Cody's progress. I also hope that there are a few people reading that have a child like Cody and are wondering what treatment might look like. I was so confused before we came here and would have appreciated a blog like this giving details about the process.
Happy Valentine's Day!
Wednesday, February 13, 2019
Surprises.
I got a really early wakeup call from Cody this morning around 5:55 AM, so forgive me if this post is extra short.
It's more good news today. Cody passed the probe yesterday, so his 8 foods are now in constant rotation. There's no exact pattern. The foods are served randomly. I talked to Dr. Criado at breakfast and learned that if he continued doing well with the 8 foods at snack and lunch, they would probably be ready to move up to the next size of bite at dinner. I didn't attend all of snack and lunch, but it went well and they determined Cody was ready for the next step. To begin with each bite is the size of a grain of rice. Cody has now doubled the size of his bites to 1/8 size bites. It's possible that he could move up to 1/4 size bites tomorrow, but Dr. Criado is not sure she wants him to move quite that quickly. They are letting the protocols, checklista, and all their scientific data guide this process. And so far Cody is showing that he's ready to move quickly. From my non-expert stand-point, this gives me a lot of hope that Cody will advance to table texture. I asked Dr. Criado about that today. It's definitely what we're working toward and the team will be able to speak more definitely about that at his goal meeting next week. They will also work with Cody on drinking from an open cup. I requested that they work with him on drinking water, but that won't be a priority, since it's not as nutritional as milk or milk substitutes.
Today the Marcus Center had a Valentine making station set up in the resource room from 9-11. I saw it posted on a flier earlier in the week that it would be with someone named Flip. Well, to our surprise, Flip is a therapy dog! Cody had his picture made with Flip then turned that photo into a Valentine for a special someone. I hope that special person REALLY likes Paw Patrol stickers, by the way. Cody also spent one of his breaks today on the playground. It was cold and windy, but sunny. It was good for Cody to get out and just run around.
Over the last few days I have been a part of more conversations with other moms at the center about their children and their progress at Marcus. As I said yesterday, Cody is miles ahead of many of them. Today that was made even more clear when I heard the other moms talking about their children learning to close their mouth on the spoon to get the food off. And while I'm so thankful Cody is beyond that, it hasn't made me lose sight of my hopes for Cody. The closer to "normal" we can get, the better.
We're making plans with Boss, CC, John, and Cole for the weekend and getting excited to see everybody soon!
It's more good news today. Cody passed the probe yesterday, so his 8 foods are now in constant rotation. There's no exact pattern. The foods are served randomly. I talked to Dr. Criado at breakfast and learned that if he continued doing well with the 8 foods at snack and lunch, they would probably be ready to move up to the next size of bite at dinner. I didn't attend all of snack and lunch, but it went well and they determined Cody was ready for the next step. To begin with each bite is the size of a grain of rice. Cody has now doubled the size of his bites to 1/8 size bites. It's possible that he could move up to 1/4 size bites tomorrow, but Dr. Criado is not sure she wants him to move quite that quickly. They are letting the protocols, checklista, and all their scientific data guide this process. And so far Cody is showing that he's ready to move quickly. From my non-expert stand-point, this gives me a lot of hope that Cody will advance to table texture. I asked Dr. Criado about that today. It's definitely what we're working toward and the team will be able to speak more definitely about that at his goal meeting next week. They will also work with Cody on drinking from an open cup. I requested that they work with him on drinking water, but that won't be a priority, since it's not as nutritional as milk or milk substitutes.
Today the Marcus Center had a Valentine making station set up in the resource room from 9-11. I saw it posted on a flier earlier in the week that it would be with someone named Flip. Well, to our surprise, Flip is a therapy dog! Cody had his picture made with Flip then turned that photo into a Valentine for a special someone. I hope that special person REALLY likes Paw Patrol stickers, by the way. Cody also spent one of his breaks today on the playground. It was cold and windy, but sunny. It was good for Cody to get out and just run around.
Over the last few days I have been a part of more conversations with other moms at the center about their children and their progress at Marcus. As I said yesterday, Cody is miles ahead of many of them. Today that was made even more clear when I heard the other moms talking about their children learning to close their mouth on the spoon to get the food off. And while I'm so thankful Cody is beyond that, it hasn't made me lose sight of my hopes for Cody. The closer to "normal" we can get, the better.
We're making plans with Boss, CC, John, and Cole for the weekend and getting excited to see everybody soon!
Tuesday, February 12, 2019
New Foods, ASD, & Tom
Today was a pretty good day for Cody. He's still crying when he has to leave me and go to sessions and he still won't play with the therapist. BUT he's already had bites of 9 foods that he's never had before coming to Marcus and this is only Day 4 of treatment.
Breakfast began with strawberries continuing from yesterday and a new food- string cheese. Try to imagine a string cheese puree. Yum? Some of the bites at breakfast were still empty spoon. He did well enough with his bites of strawberry and string cheese that they decided to probe him again with chicken nuggets, fries, broccoli, and pears like yesterday. He did not pass that probe but it was better than the last one. He actually handled pears and broccoli pretty well. He cried a lot on chicken nuggets and fries.
His snack session today was replaced with a weekly oral motor skills session. I go to that session with him to learn how to do these exercises at home. We'll now do chewing practice and gum massage 3 times a day. For now I'll rub my finger over his gums going as far back as he'll allow without gagging 3 times allowing him to play with a toy between each "rub." We'll do that in the morning, afternoon, and night. He got a yellow "chewy" that I will have him bite 3 times on his molars on both sides of his mouth 3 times for each session 3 times a day. We are familiar with some of these things from OT with Ms. Debbie. Cody was excited to get a sticker after completing that session. :)
At lunch, rice was added to Cody's rotation of strawberries and string cheese. Rice was an easy addition, probably because it's a pretty bland food. Out of 5 bites at this point, only one was an empty spoon. Forgive me for not remembering the pattern! After several easy sets of five on strawberries, cheese, and rice, they tried the probe foods again. This time pears were ok and french fries did not get as bad of a reaction as it did previously. I definitely don't understand the protocol or what the probe showed, but after the probe they decided to add peas. That went ok, so the rotation became empty spoon, strawberry, cheese, rice, and peas. From what I am seeing, the goal seems to be quickly exposing Cody to a lot of different foods rather than increasing the amount of the foods he's becoming most comfortable with.
At dinner there were no empty spoon bites and... Cody passed the probe! For the rest of the dinner session they rotated the probe foods- nuggets, fries, pears, and broccoli. There were no empty spoon bites at the dinner session! One of the head feeding therapists was in the observation room with me at that point and kept reiterating to me how well Cody is doing.
I do recognize that Cody came into this program far ahead of many kids we've come in contact with here. There are many with feeding tubes and I've rarely seen kids actually eating food themselves. Cody is ahead because he already has 5 foods! He already eats with a spoon! Some are just drinking Ensure if having anything orally at all. No one has made comments to me about Cody's "advanced" eating, but I have had comments about how verbal he is for 3.5. This may be obvious already, but most of the kids at Marcus are moderately to severely autistic. Cody has been referred for an ASD evaluation, but even the people who referred him are aware that if he is on the spectrum, he's very, very high functioning. When another parent asked me how old Cody was she was surprised and commented that her son didn't say his first word until he was 3. Not only can Cody talk, he spent about 15 minutes today reading full sentences that I wrote for him on a magna-doodle board. I think a lot of people at Marcus have been surprised by how engaging and verbal Cody is. He talks to people in the halls and elevators. I can't tell you how many strangers have commented to me about how cute and funny he is. I have felt at times like Cody is missing interacting with other kids like he does at preschool. The ironic part is that Cody is probably less social than MOST 3 year olds. He is just MORE social than most kids at Marcus. None of the other kids talk to Cody at all. Many are non-verbal. I have encouraged Cody to introduce himself, share toys, etc, which he has done. There's one boy who is 4 that seems more like Cody, but he's on the opposite schedule of Cody (he's in therapy when Cody's out), so they don't get much chance to be together. The therapist, Demerea, who is with Cody most often, is in training. I have wondered if they assigned her to Cody's case, because he is easier than some others.
For all of those worried about our "monkey yogurt" situation, my aunt and uncle tracked some down for us and delivered it to the Marcus Center today at lunchtime. Cody and I REALLY and truly appreciate not having to drive around in the rain this afternoon looking for yogurt. And I'm sorry that Cody insisted on calling my uncle Tom rather than his actual name, Tod. :)
More tomorrow.
Breakfast began with strawberries continuing from yesterday and a new food- string cheese. Try to imagine a string cheese puree. Yum? Some of the bites at breakfast were still empty spoon. He did well enough with his bites of strawberry and string cheese that they decided to probe him again with chicken nuggets, fries, broccoli, and pears like yesterday. He did not pass that probe but it was better than the last one. He actually handled pears and broccoli pretty well. He cried a lot on chicken nuggets and fries.
His snack session today was replaced with a weekly oral motor skills session. I go to that session with him to learn how to do these exercises at home. We'll now do chewing practice and gum massage 3 times a day. For now I'll rub my finger over his gums going as far back as he'll allow without gagging 3 times allowing him to play with a toy between each "rub." We'll do that in the morning, afternoon, and night. He got a yellow "chewy" that I will have him bite 3 times on his molars on both sides of his mouth 3 times for each session 3 times a day. We are familiar with some of these things from OT with Ms. Debbie. Cody was excited to get a sticker after completing that session. :)
At lunch, rice was added to Cody's rotation of strawberries and string cheese. Rice was an easy addition, probably because it's a pretty bland food. Out of 5 bites at this point, only one was an empty spoon. Forgive me for not remembering the pattern! After several easy sets of five on strawberries, cheese, and rice, they tried the probe foods again. This time pears were ok and french fries did not get as bad of a reaction as it did previously. I definitely don't understand the protocol or what the probe showed, but after the probe they decided to add peas. That went ok, so the rotation became empty spoon, strawberry, cheese, rice, and peas. From what I am seeing, the goal seems to be quickly exposing Cody to a lot of different foods rather than increasing the amount of the foods he's becoming most comfortable with.
At dinner there were no empty spoon bites and... Cody passed the probe! For the rest of the dinner session they rotated the probe foods- nuggets, fries, pears, and broccoli. There were no empty spoon bites at the dinner session! One of the head feeding therapists was in the observation room with me at that point and kept reiterating to me how well Cody is doing.
I do recognize that Cody came into this program far ahead of many kids we've come in contact with here. There are many with feeding tubes and I've rarely seen kids actually eating food themselves. Cody is ahead because he already has 5 foods! He already eats with a spoon! Some are just drinking Ensure if having anything orally at all. No one has made comments to me about Cody's "advanced" eating, but I have had comments about how verbal he is for 3.5. This may be obvious already, but most of the kids at Marcus are moderately to severely autistic. Cody has been referred for an ASD evaluation, but even the people who referred him are aware that if he is on the spectrum, he's very, very high functioning. When another parent asked me how old Cody was she was surprised and commented that her son didn't say his first word until he was 3. Not only can Cody talk, he spent about 15 minutes today reading full sentences that I wrote for him on a magna-doodle board. I think a lot of people at Marcus have been surprised by how engaging and verbal Cody is. He talks to people in the halls and elevators. I can't tell you how many strangers have commented to me about how cute and funny he is. I have felt at times like Cody is missing interacting with other kids like he does at preschool. The ironic part is that Cody is probably less social than MOST 3 year olds. He is just MORE social than most kids at Marcus. None of the other kids talk to Cody at all. Many are non-verbal. I have encouraged Cody to introduce himself, share toys, etc, which he has done. There's one boy who is 4 that seems more like Cody, but he's on the opposite schedule of Cody (he's in therapy when Cody's out), so they don't get much chance to be together. The therapist, Demerea, who is with Cody most often, is in training. I have wondered if they assigned her to Cody's case, because he is easier than some others.
For all of those worried about our "monkey yogurt" situation, my aunt and uncle tracked some down for us and delivered it to the Marcus Center today at lunchtime. Cody and I REALLY and truly appreciate not having to drive around in the rain this afternoon looking for yogurt. And I'm sorry that Cody insisted on calling my uncle Tom rather than his actual name, Tod. :)
More tomorrow.
Monday, February 11, 2019
And We're Back
Cody and I had a pretty good first weekend in Atlanta. Saturday morning we went to the Children's Museum of Atlanta. Cody had a lot of fun playing and exploring. I couldn't believe how well he did with the amount of people that were there. I can imagine that the museum is a lot more fun on a weekday morning when there aren't quite as many people there. I struggled with wanting to put all the play food back in the right place in the "grocery store" and all the dishes away in the "Waffle House!" Maybe I'm more OCD than some may think. That afternoon and evening we hung out at our "house" and watched The Grinch. It's the only thing I can convince Cody to watch other than the Fizzy Fun Toys channel on YouTube. I'm going to have these videos memorized soon.
Sunday was cold and drizzly. Our only outing was to Walmart, so we could stock up for the week. Unfortunately, they didn't have one of Cody's favorites- "Monkey Yogurt." That means I've yet to find a store in Atlanta that is a one-stop-shop for all of Cody's foods. I guess we're lucky that the Walmart in Cairo sells everything he likes. After our trip to Walmart, we watched Fizzy Fun Toys and The Grinch all day. Yeah. Fun.
Today was back to The Marcus Center. I decided to call it "food school" to Cody. I was surprised he didn't complain at all about going back today. Just for some background, The Marcus Center divides bites into groups of 5. They have record sheets divided into groups of 5 and they set a timer that tells them when each bite should be given. If you remember, on Friday all of Cody's bites were empty spoon. At the end of the first session ("breakfast") today they introduced strawberries one out of every 5 bites. If I remember right it was empty spoon bite, empty spoon bite, strawberry bite, empty spoon, empty soon. And repeat. The therapist in the room with Cody and in the observation room both diligently record all his reactions on a checklist. I haven't looked at the list, but his reactions could include things like gagging, spitting it out, making bad comments about the food, turning his head, etc. Cody has done some gagging and spitting, but most of his bites were positive. While they are feeding him, he's allowed to choose a toy. Cody's been choosing a Paw Patrol DVD every time. By the last session ("dinner") today, Cody was having strawberries on bites 2, 3, and 5. He was doing pretty well with swallowing, not gagging, etc. No crying, which was GREAT! Also at the last session today they did a "probe." A probe is when they test him on 4 other foods to see how he would tolerate them and guide how they will proceed. If he fails the probe, they go back to just strawberries and slowly introduce the next food. I'm not exactly sure why the probe is necessary, but I'm not the expert here. For his probe, Cody was given broccoli & cheese, gluten free chicken nuggets, pears, and french fries. All of these are pureed, of course. (I think that I mentioned in a previous post that John and I were given a list of foods to select from. The probe foods were all things we selected from that list. Cody has allergies to eggs, wheat, and peanuts, so that's the reason his chicken nuggets were gluten free). Anyhow, he gagged on the broccoli & cheese and got upset, but not too bad. The french fries were WAY worse and he cried a LOT. Same for the gluten free chicken nuggets. The pears he took pretty easily, most likely because he recognized the flavor. Almost all of his foods he currently eats are fruit or fruit flavored. One of his main foods is pear applesauce. Sasha, Cody's case manager, said he may have failed the probe, but he's not too far off. I think that is good news for Cody's progress.
This morning I found out that Cody's goal meeting will be on February 21st at 9:30 AM. All of Cody's "team" will be at this meeting. We'll discuss his progress so far and talk about how they will proceed. Maybe at that time we'll talk about how long they expect treatment to last more specifically. I know we will talk about what we want to accomplish during treatment and I'm hoping they'll give us some idea about how far they think they can get with him. John won't be able to attend the meeting in person, so I'm hoping they'll allow me to Facetime him in.
One thing that has really surprised me about Cody over the last week is how stand-offish he's been to the therapists during treatment. He goes to occupational therapy once a week in Thomasville and it didn't take him long at all to warm up to "Ms. Debbie." The therapist-in-training who has been with Cody the most tries SOO HARD to play with Cody during treatment and he's just NOT having it. He doesn't do anything negative really and he might give her a chuckle or smile, but it's not his typical playfulness! She tickles him and tries to make him laugh. From the other side of the observation mirror, I DESPERATELY want to help her out and get him to laugh! I asked Cody in the car today why he won't play with Demerea (I hope I spelled that right). What he told me is that she won't let him out of the room. I just asked him again why he doesn't want to play with Demerea and he said "because I just want to play with Mommy." When we got in the car today I asked him about eating food in the room with Demerea and he got his bad expression, did something weird with his mouth, and asked for juice. He told my dad on the phone today that he ate "yucky food" at school. They haven't given me a lot of direction yet about how to talk about food with Cody at home, but I do know they will say not to engage in negative talk about food. Dr. Criado will say to turn away and show no reaction. You should not say things like "it's not yucky," "mommy likes it," etc. Sasha said that Cody's reaction to the therapists is not unusual and it's normal to take some warming up. She said by the end of the second week, the kids are more engaged with the therapists. She also said that he was more conversational during one session where they played with his Paw Patrol toys rather than watch the DVD. That made sense to me, because Cody does tend to tune everybody out when he's watching something on TV. I sincerely hope that Cody shows everybody his cute personality soon, though. It makes me uncomfortable to see him so stoic!
Cody and I are already calling our condo "home." I guess that is good, since we may as well get used to it. But it's also kind of sad to me, because I don't want Cody to think we've permanently left our real home in Cairo. I do wonder what he's thinking in his head about all of this. He doesn't talk about Cairo or being at our REAL home, though he does talk about Daddy. I am also very interested to see how the separation affects him and how it will be when we finally go back home. I miss home a lot. I miss John and Cole very badly. I think everybody is planning to come up here this weekend- my parents, John, and Cole. Not sure how all of that is going to work, but I'm sure we'll figure it out.
After "school" today we went back to the Target where I got monkey yogurt before. They were sold out. Panic. We only have 1.5 boxes left. That's 6 yogurts. He can easily eat 4 in a day. I bought more of the one kind of yogurt in a cup that Cody will eat. They only had one 6-pack left! He will only sometimes spoon feed it himself though. So while it's more work for me, at least it is something he will eat. I will call around the various Publix stores tomorrow to see which one has Strawberry Explosion Dannon Squeezables in stock. I haven't been able to find it on the Publix app, but the Dannon website lists several Publix stores around here. We get out of "school" at 3:15, so we only have a short window of time to shop without the traffic getting difficult. Plus, I'm not too keen on driving around Atlanta searching in grocery stores with a 3.5 year old.
There's way more I was thinking I might write about tonight, but this post is getting long and I'm exhausted (as usual). More tomorrow. Keep the prayers and good vibes coming. We love hearing from all of you and knowing you're all behind us.
Sunday was cold and drizzly. Our only outing was to Walmart, so we could stock up for the week. Unfortunately, they didn't have one of Cody's favorites- "Monkey Yogurt." That means I've yet to find a store in Atlanta that is a one-stop-shop for all of Cody's foods. I guess we're lucky that the Walmart in Cairo sells everything he likes. After our trip to Walmart, we watched Fizzy Fun Toys and The Grinch all day. Yeah. Fun.
Today was back to The Marcus Center. I decided to call it "food school" to Cody. I was surprised he didn't complain at all about going back today. Just for some background, The Marcus Center divides bites into groups of 5. They have record sheets divided into groups of 5 and they set a timer that tells them when each bite should be given. If you remember, on Friday all of Cody's bites were empty spoon. At the end of the first session ("breakfast") today they introduced strawberries one out of every 5 bites. If I remember right it was empty spoon bite, empty spoon bite, strawberry bite, empty spoon, empty soon. And repeat. The therapist in the room with Cody and in the observation room both diligently record all his reactions on a checklist. I haven't looked at the list, but his reactions could include things like gagging, spitting it out, making bad comments about the food, turning his head, etc. Cody has done some gagging and spitting, but most of his bites were positive. While they are feeding him, he's allowed to choose a toy. Cody's been choosing a Paw Patrol DVD every time. By the last session ("dinner") today, Cody was having strawberries on bites 2, 3, and 5. He was doing pretty well with swallowing, not gagging, etc. No crying, which was GREAT! Also at the last session today they did a "probe." A probe is when they test him on 4 other foods to see how he would tolerate them and guide how they will proceed. If he fails the probe, they go back to just strawberries and slowly introduce the next food. I'm not exactly sure why the probe is necessary, but I'm not the expert here. For his probe, Cody was given broccoli & cheese, gluten free chicken nuggets, pears, and french fries. All of these are pureed, of course. (I think that I mentioned in a previous post that John and I were given a list of foods to select from. The probe foods were all things we selected from that list. Cody has allergies to eggs, wheat, and peanuts, so that's the reason his chicken nuggets were gluten free). Anyhow, he gagged on the broccoli & cheese and got upset, but not too bad. The french fries were WAY worse and he cried a LOT. Same for the gluten free chicken nuggets. The pears he took pretty easily, most likely because he recognized the flavor. Almost all of his foods he currently eats are fruit or fruit flavored. One of his main foods is pear applesauce. Sasha, Cody's case manager, said he may have failed the probe, but he's not too far off. I think that is good news for Cody's progress.
This morning I found out that Cody's goal meeting will be on February 21st at 9:30 AM. All of Cody's "team" will be at this meeting. We'll discuss his progress so far and talk about how they will proceed. Maybe at that time we'll talk about how long they expect treatment to last more specifically. I know we will talk about what we want to accomplish during treatment and I'm hoping they'll give us some idea about how far they think they can get with him. John won't be able to attend the meeting in person, so I'm hoping they'll allow me to Facetime him in.
One thing that has really surprised me about Cody over the last week is how stand-offish he's been to the therapists during treatment. He goes to occupational therapy once a week in Thomasville and it didn't take him long at all to warm up to "Ms. Debbie." The therapist-in-training who has been with Cody the most tries SOO HARD to play with Cody during treatment and he's just NOT having it. He doesn't do anything negative really and he might give her a chuckle or smile, but it's not his typical playfulness! She tickles him and tries to make him laugh. From the other side of the observation mirror, I DESPERATELY want to help her out and get him to laugh! I asked Cody in the car today why he won't play with Demerea (I hope I spelled that right). What he told me is that she won't let him out of the room. I just asked him again why he doesn't want to play with Demerea and he said "because I just want to play with Mommy." When we got in the car today I asked him about eating food in the room with Demerea and he got his bad expression, did something weird with his mouth, and asked for juice. He told my dad on the phone today that he ate "yucky food" at school. They haven't given me a lot of direction yet about how to talk about food with Cody at home, but I do know they will say not to engage in negative talk about food. Dr. Criado will say to turn away and show no reaction. You should not say things like "it's not yucky," "mommy likes it," etc. Sasha said that Cody's reaction to the therapists is not unusual and it's normal to take some warming up. She said by the end of the second week, the kids are more engaged with the therapists. She also said that he was more conversational during one session where they played with his Paw Patrol toys rather than watch the DVD. That made sense to me, because Cody does tend to tune everybody out when he's watching something on TV. I sincerely hope that Cody shows everybody his cute personality soon, though. It makes me uncomfortable to see him so stoic!
Cody and I are already calling our condo "home." I guess that is good, since we may as well get used to it. But it's also kind of sad to me, because I don't want Cody to think we've permanently left our real home in Cairo. I do wonder what he's thinking in his head about all of this. He doesn't talk about Cairo or being at our REAL home, though he does talk about Daddy. I am also very interested to see how the separation affects him and how it will be when we finally go back home. I miss home a lot. I miss John and Cole very badly. I think everybody is planning to come up here this weekend- my parents, John, and Cole. Not sure how all of that is going to work, but I'm sure we'll figure it out.
After "school" today we went back to the Target where I got monkey yogurt before. They were sold out. Panic. We only have 1.5 boxes left. That's 6 yogurts. He can easily eat 4 in a day. I bought more of the one kind of yogurt in a cup that Cody will eat. They only had one 6-pack left! He will only sometimes spoon feed it himself though. So while it's more work for me, at least it is something he will eat. I will call around the various Publix stores tomorrow to see which one has Strawberry Explosion Dannon Squeezables in stock. I haven't been able to find it on the Publix app, but the Dannon website lists several Publix stores around here. We get out of "school" at 3:15, so we only have a short window of time to shop without the traffic getting difficult. Plus, I'm not too keen on driving around Atlanta searching in grocery stores with a 3.5 year old.
There's way more I was thinking I might write about tonight, but this post is getting long and I'm exhausted (as usual). More tomorrow. Keep the prayers and good vibes coming. We love hearing from all of you and knowing you're all behind us.
Friday, February 8, 2019
Lows and Highs.
Well, I do believe Day 2 was as hard as Day 1, but for different reasons.
Today all 4 sessions were just with an empty spoon, which Cody accepted well. But today Cody had a lot of meltdowns. I think they were mostly due to being tired and stressed out from a big week of transition. Cody really thrives on a schedule and routine. He's doing very well, all things considered, but today I heard his first "I want to go home!" That was hard, because I know it will be a long time before I can say "yes, let's go." He also was struggling today with having to leave his toys at therapy sessions and not getting to play with them whenever he wants. His last session of the day, which they call "dinner," was particularly hard, because it was right after he woke up from a nap. Yes, he did sleep today! I found out from Cody that they play soft music while they nap at his preschool, so I did that today and he took a nice long nap. They said it's pretty typical for the dinner session to be the worst, particularly on Friday afternoon, because it's been a long day/week and the kids are DONE.
The therapists come pick Cody up from wherever we are (play area, family lounge, or nap room) and take him to each session. I am allowed to follow later and observe the session from behind a two way mirror once they get Cody in the room. I'm asked to leave the observation room and wait for the therapists to bring him to me wherever I am after the session. Each time Cody cries when they come get him, but he does go with them fairly easily, despite the tears. I have witnessed other children having a much harder time leaving their parents. It is still heart breaking though, because at the beginning of each session he's always calling for me. Cody always calms down as soon as they put on his Paw Patrol DVD. Even after his hardest session, he comes back to me like nothing happened. The one exception was when he wanted to keep playing with his Paw Patrol squishies after the session was over. Again, he calmed down when I showed him a video on his Kindle and gave him a snack.
One fun thing from today was getting to see and talk to my friend from college whose daughter went through the program and is still coming for therapy every other Friday. I got to share with her how the program is going for us and meet her daughter. I also had more conversations with other caregivers who are there with their children for therapy. I learned that one family is traveling 2 hours to therapy every morning and home 2 hours away every afternoon. And did I mention she brings her 7 month old son in addition to her 6 year old who is having treatment?? She also has a 4 year old who is staying with family. Super Mom.
Other successes today:
- I navigated to a Target on N Druid Hills that sells "monkey yogurt." Cody insisted on buying Goldfish for Cole (so sweet) and a Mickey Mouse PEZ dispenser for himself that he is excited to show Daddy on his next visit (which Cody talked about, showing me that he understands that we're staying and Daddy will come visit).
- I unleashed my inner Claire Coleman and honked at someone in Atlanta traffic. I honk at people all the time in Cairo/Albany but never Atlanta. That was a first.
- I finally found the mailboxes and received two sweet notes from friends back home.
- I bought tickets to the Children's Museum of Atlanta for Cody and I tomorrow.
- Cody is happily playing with Paw Patrol figures and playdough next to me at the table while I type this post.
- Tonight I will lay on the couch and watch Grey's Anatomy and veg instead of updating this blog.
Thursday, February 7, 2019
Day 1
I promise to try and make my blog post titles a little more interesting than Day 1 in the future, but I don't have the brain power tonight.
We arrived at the Marcus Center earlier than needed this morning. We figured early was better than late, so we left the condo with plenty of time to spare. We managed to somehow keep Cody occupied while waiting before we met Sasha, our case manager. She showed us to the family lounge, where Cody has his own nap room. On his nap room door is his name, a big picture of Lightning McQueen, and his daily schedule. The room has a mat for Cody to rest on and a recliner for me. The family lounge has a large table, tv, fridge, microwave, and toys. We filled out paperwork there while Cody played.
His first session was at 8:45 and was basically a short repeat of the evaluation session where they watched him through a two-way mirror eat 2 of his preferred foods, then watched him be served/offered 2 non-preferred foods. They weighed the plates before and after serving them to see how much he ate during the session. After that we had a while to play and explore our new surroundings. There is an additional playroom and sitting area near a locker station where each child has a locker where things can be stored safely. Before the second session, his therapists came to get a basket of toys we brought from home that are "highly favored" but not items he can't live without. These toys will be kept at the center for treatment. The second session was basically them just scientifically ranking his toys to find out which are most preferred. They will use this information to decide which toys as incentives during therapy.
During the second session, we met with a nutritionist to choose from a list 16 foods that Cody will be offered over the 8 weeks. They have you select things that are closest to what you would normally serve at home. What is understandable but disappointing is that all these foods will initially be served as puree to Cody. I understand why- it eliminates the texture issue and the work of chewing- but getting him to eat more pureed foods does not make our lives any easier, in my opinion. I can't go to McDonald's with my blender and puree up his french fries. So my prayer is that Cody is able to progress through the puree stage to the table food stage while he's here. I don't know if that's realistic or not though. We will have a goal-setting meeting soon and I'm sure that's something we will discuss.
Today was an unseasonably warm day, so we spent our next break out on the playground. Cody had a preferred snack and I ate my lunch. We facetimed CC to check on Coley-Cole. Cody had fun playing, but got in a little bit of a bad mood at this point. He didn't want to go back inside, didn't want his pull-up changed, and REALLY didn't want to leave the inside play area to go to his next session. He did walk away with the therapist but was already crying. At this point, John needed to head to Tifton for All-District band, so my emotions were ramped up, you could say. After saying goodbye to John, I came back inside and could hear Cody crying before I even got in the observation room. At the third session, Sasha repeatedly offered Cody teeny tiny bites of purees on a spoon. I should have mentioned that at each session, Cody is strapped into a booster seat at a table next to whoever is treating him. I say that now, because if he could have, he would have been under the table, clawing at the door, etc. He was screaming bloody murder. I know this was expected though, because Sasha already had ear plugs in. He screamed Mommy over and over and "Mommy, where are you???" breaking my already hurting heart. Their protocol is to call the psychologist when it gets to that point. She agreed that Cody could be given some of his toys to calm him down, which helped immensely. After the session was over, he came back to me like nothing had happened. One of the therapists had already mentioned to me that the first week can be way harder for the parents than the kids, because kids are so resilient. That is true for Cody.
After that hard session was his nap break. He had more of his preferred snacks and watched some "Fizzy Fun Toys" on his tablet while resting on his nap mat, but never really went to sleep. I imagine as the weeks progress, he may actually sleep, but today it was all too new.
The final session of the day was just Cody being served an empty spoon. You could say this is kind of "square one." They have to get him to at least accept the spoon before they can put anything on it. Of course to me, it seemed kind of crazy because he puts spoons in his mouth at home all the time. But the psychologist reminded me that it's not the same here and he had already seen that spoon with puree on it, so he doesn't trust it. I am trusting the Marcus Center, because they have done this over and over and have procedures and protocols. Everything is done very "scientifically," but done so in a way that fits with the child's needs. I can report that Cody did take some "bites" of the spoon during that session, which is an achievement however small!
Today I also met with the PA that is handling Cody's medical needs while he's here. We were able to discuss his recent endoscopy results and make some changes to the supplements and medicines he's taking. It was very nice to be able to just talk to her in person and get her opinion on some issues Cody is having. The dietician also met with me one other time to discuss when Cody should eat his preferred foods throughout the day to not hinder any of the therapy sessions but still allow him to get the calories he needs. And I have to say he totally PIGGED OUT on crunchies when he got home.
So that's Day 1. Only 39 to go.
We arrived at the Marcus Center earlier than needed this morning. We figured early was better than late, so we left the condo with plenty of time to spare. We managed to somehow keep Cody occupied while waiting before we met Sasha, our case manager. She showed us to the family lounge, where Cody has his own nap room. On his nap room door is his name, a big picture of Lightning McQueen, and his daily schedule. The room has a mat for Cody to rest on and a recliner for me. The family lounge has a large table, tv, fridge, microwave, and toys. We filled out paperwork there while Cody played.
His first session was at 8:45 and was basically a short repeat of the evaluation session where they watched him through a two-way mirror eat 2 of his preferred foods, then watched him be served/offered 2 non-preferred foods. They weighed the plates before and after serving them to see how much he ate during the session. After that we had a while to play and explore our new surroundings. There is an additional playroom and sitting area near a locker station where each child has a locker where things can be stored safely. Before the second session, his therapists came to get a basket of toys we brought from home that are "highly favored" but not items he can't live without. These toys will be kept at the center for treatment. The second session was basically them just scientifically ranking his toys to find out which are most preferred. They will use this information to decide which toys as incentives during therapy.
During the second session, we met with a nutritionist to choose from a list 16 foods that Cody will be offered over the 8 weeks. They have you select things that are closest to what you would normally serve at home. What is understandable but disappointing is that all these foods will initially be served as puree to Cody. I understand why- it eliminates the texture issue and the work of chewing- but getting him to eat more pureed foods does not make our lives any easier, in my opinion. I can't go to McDonald's with my blender and puree up his french fries. So my prayer is that Cody is able to progress through the puree stage to the table food stage while he's here. I don't know if that's realistic or not though. We will have a goal-setting meeting soon and I'm sure that's something we will discuss.
Today was an unseasonably warm day, so we spent our next break out on the playground. Cody had a preferred snack and I ate my lunch. We facetimed CC to check on Coley-Cole. Cody had fun playing, but got in a little bit of a bad mood at this point. He didn't want to go back inside, didn't want his pull-up changed, and REALLY didn't want to leave the inside play area to go to his next session. He did walk away with the therapist but was already crying. At this point, John needed to head to Tifton for All-District band, so my emotions were ramped up, you could say. After saying goodbye to John, I came back inside and could hear Cody crying before I even got in the observation room. At the third session, Sasha repeatedly offered Cody teeny tiny bites of purees on a spoon. I should have mentioned that at each session, Cody is strapped into a booster seat at a table next to whoever is treating him. I say that now, because if he could have, he would have been under the table, clawing at the door, etc. He was screaming bloody murder. I know this was expected though, because Sasha already had ear plugs in. He screamed Mommy over and over and "Mommy, where are you???" breaking my already hurting heart. Their protocol is to call the psychologist when it gets to that point. She agreed that Cody could be given some of his toys to calm him down, which helped immensely. After the session was over, he came back to me like nothing had happened. One of the therapists had already mentioned to me that the first week can be way harder for the parents than the kids, because kids are so resilient. That is true for Cody.
After that hard session was his nap break. He had more of his preferred snacks and watched some "Fizzy Fun Toys" on his tablet while resting on his nap mat, but never really went to sleep. I imagine as the weeks progress, he may actually sleep, but today it was all too new.
The final session of the day was just Cody being served an empty spoon. You could say this is kind of "square one." They have to get him to at least accept the spoon before they can put anything on it. Of course to me, it seemed kind of crazy because he puts spoons in his mouth at home all the time. But the psychologist reminded me that it's not the same here and he had already seen that spoon with puree on it, so he doesn't trust it. I am trusting the Marcus Center, because they have done this over and over and have procedures and protocols. Everything is done very "scientifically," but done so in a way that fits with the child's needs. I can report that Cody did take some "bites" of the spoon during that session, which is an achievement however small!
Today I also met with the PA that is handling Cody's medical needs while he's here. We were able to discuss his recent endoscopy results and make some changes to the supplements and medicines he's taking. It was very nice to be able to just talk to her in person and get her opinion on some issues Cody is having. The dietician also met with me one other time to discuss when Cody should eat his preferred foods throughout the day to not hinder any of the therapy sessions but still allow him to get the calories he needs. And I have to say he totally PIGGED OUT on crunchies when he got home.
So that's Day 1. Only 39 to go.
Wednesday, February 6, 2019
From the Beginning
He'll grow out of it. Don't become a short order cook. Give him less milk, then he'll eat more food. He's just picky.
These are examples of the well-meaning advice we've heard from friends and family over the last 3.5 years with Cody. But in my heart, I've always known there was an issue deeper than Facebook advice could touch.
Cody was born on June 7, 2015 by emergency c-section after a failed induction. I was 36 weeks and 5 days along. My blood pressure had become a problem earlier in my pregnancy and after 2 weeks bedrest, it was creeping back up and it was time for Cody to be delivered. He spent a few days in the NICU for low blood sugar and jaundice. Having a baby in the NICU was not a surprise. As a Type 1 diabetic, I almost assumed he would have issues regulating his blood sugar when he was born. But after we brought Cody home, he progressed just like any other baby. He was happy, playful, smart, and had no real issues that we could tell. He loved his bottles and we started rice cereal as soon as the doctor said we could. He ate the baby food we offered- yummy bananas and yucky green beans. We progressed from stage 1 food to stage 2 with no problem. He was not particularly interested in what we had on our plates, though, and when we tried stage 3 foods he spit out every chunk. I don't remember specifics really, but I was anxious about his eating before we went to the beach in July 2016. We came home from that trip and I thought we had really turned a corner when I got Cody to take a bite of spaghettios. He was just over a year old at that time. And that's probably the last "new" thing Cody ever allowed in his mouth.
His foods were and still are applesauce (pouches and cups), Plum Organic pumpkin and banana teething wafers, garden tomato flavored Gerber crunchies, pink or purple colored yogurt (Monkey Yogurt in a pouch or Paw Patrol yogurt in a cup), and bananas (a real food!!). There have been very minor changes along the way. After starting occupational therapy in April 2018, he tried green (pear flavored) applesauce, but then he eliminated regular applesauce. So now he eats "applesauce in a cup with green in it." He used to eat some strawberry banana yogurt pouches made by Gerber, but they changed the packaging from yellow to blue and he refused them after the change.
His bananas must be cut into large chunks. He will not eat the ends or any bites with bruises. His cookies cannot be broken. His crunchies also cannot be broken or too small. He drinks apple juice mixed with water from an Avent soft spout cup during the day and milk from the same kind of cup at night. These are his only beverages and only way he will drink. Nope. No water, soft drinks, milkshakes, or Pediasure. No open cups. No straws.
So at this point, I guess some of you are probably wondering what kind of parents we could possibly be to allow this to go on in our home. We tried force-feeding. We tried offering new things. We tried to trick him. We tried everything. The gagging was terrifying and the tantrums were unbearable. We told the pediatrician and were told he would grow out of it and to just keep offering foods. Finally at his 2 year old appointment they listened and said if he's not eating by Christmas, we'll refer him for therapy. I could have told them right there that second that he wasn't going to be eating by Christmas, but I waited. Finally in April he started seeing an occupational therapist who immedately diagnosed him with Sensory Processing Disorder. You better believe Dr. Google and I had already diagnosed him with that, so it came as no surprise. I had a second diagnosis in mind- ARFID (Avoidant/Restrictive Food Intake Disorder) and a joined a facebook group of parents with kids suffering from ARFID. I knew ARFID was a new and more unusual diagnosis so I didn't push it when it wasn't brought up at therapy or regular doctor appointments.
Our occupational therapist conferenced with our pediatrician and decided to send a referral to Marcus Autism Center in Atlanta for autism concerns. We got on a wait list for an autism evaluation. I talked to Marcus about my concerns about Cody eating and they suggested sending in a separate referral for feeding concerns to help him get into their Intensive Feeding Program. I jumped on that and within days we received a call from the feeding program. We knew the process would be slow at Marcus. It's a prestigious program with a wait list of 6 months- 2 years we heard. In October, the week of Hurricane Michael, we were asked to bring Cody for a physical at the Center for Advanced Pediatrics in Atlanta (part of Children's Healthcare of Atlanta). The next call was in December and we scheduled a team evaluation. On December 12th, my mom and I took Cody to the Marcus Center for a 3 hour evaluation with a nutritionist, a speech therapist, and a psychologist. I won't go into detail, but the result of that appointment was Cody being recommended for Intensive Day Treatment at the Marcus Autism Center. He also got a new diagnosis- ARFID! (Guess they should have consulted Dr. Mommy). Cody was added to the wait list for the feeding program. I thought we might hear from them sometime in the Spring or Summer, so you can imagine how surprised I was 2.5 weeks ago when they asked for Cody to begin treatment on February 7th. It has been a whirlwind since then. Buying a new car, writing 8 weeks of sub lesson plans, packing our home, finding a place to live for 2 months in Atlanta... all the while trying to live and soak up all the time I could at home with my family (especially baby Cole).
As you can imagine, all of this is incredibly hard to deal with on an everyday basis. We buy crunchies in bulk from amazon. We must take Cody acceptable food with us if we eat out of our home, which we rarely do with Cody. He does not like to be around or smell other food, so going out to eat is almost out of the question. Maybe the hardest part of Cody's ARFID is that food is not just nutritional, it's a part of our culture. What I wish for is to be able to take Cody out for icecream after a long week at school. To cook his favorite meal when he's feeling sad. To take he and Cole for Happy Meals to celebrate an achievement. To see him eat his birthday cake and not just blow out the candles. To see him enjoy snack time with his friends at school and church. Facebook can be difficult, because every picture of a toddler enjoying their birthday cake sparks jealousy in me. Friends post pictures of their children eating hotdogs, pizza, candy, cookies, and of course complain about their terrible diets. I would cry happy tears if Cody ever ate any of those things.
So here we are. Tonight is the first night of our "new normal." Tomorrow morning at 8 AM we begin treatment at Marcus. We will be here for 6-8 weeks. In the end I hope I can say that Cody eats more than 5 foods. I hope he drinks water. I hope he drinks from a regular cup. I hope I have more options to pack in his lunchbox. I will be posting as often as I can about his therapy at Marcus. I hope you'll follow along and keep Cody in your prayers.
These are examples of the well-meaning advice we've heard from friends and family over the last 3.5 years with Cody. But in my heart, I've always known there was an issue deeper than Facebook advice could touch.
Cody was born on June 7, 2015 by emergency c-section after a failed induction. I was 36 weeks and 5 days along. My blood pressure had become a problem earlier in my pregnancy and after 2 weeks bedrest, it was creeping back up and it was time for Cody to be delivered. He spent a few days in the NICU for low blood sugar and jaundice. Having a baby in the NICU was not a surprise. As a Type 1 diabetic, I almost assumed he would have issues regulating his blood sugar when he was born. But after we brought Cody home, he progressed just like any other baby. He was happy, playful, smart, and had no real issues that we could tell. He loved his bottles and we started rice cereal as soon as the doctor said we could. He ate the baby food we offered- yummy bananas and yucky green beans. We progressed from stage 1 food to stage 2 with no problem. He was not particularly interested in what we had on our plates, though, and when we tried stage 3 foods he spit out every chunk. I don't remember specifics really, but I was anxious about his eating before we went to the beach in July 2016. We came home from that trip and I thought we had really turned a corner when I got Cody to take a bite of spaghettios. He was just over a year old at that time. And that's probably the last "new" thing Cody ever allowed in his mouth.
His foods were and still are applesauce (pouches and cups), Plum Organic pumpkin and banana teething wafers, garden tomato flavored Gerber crunchies, pink or purple colored yogurt (Monkey Yogurt in a pouch or Paw Patrol yogurt in a cup), and bananas (a real food!!). There have been very minor changes along the way. After starting occupational therapy in April 2018, he tried green (pear flavored) applesauce, but then he eliminated regular applesauce. So now he eats "applesauce in a cup with green in it." He used to eat some strawberry banana yogurt pouches made by Gerber, but they changed the packaging from yellow to blue and he refused them after the change.
His bananas must be cut into large chunks. He will not eat the ends or any bites with bruises. His cookies cannot be broken. His crunchies also cannot be broken or too small. He drinks apple juice mixed with water from an Avent soft spout cup during the day and milk from the same kind of cup at night. These are his only beverages and only way he will drink. Nope. No water, soft drinks, milkshakes, or Pediasure. No open cups. No straws.
So at this point, I guess some of you are probably wondering what kind of parents we could possibly be to allow this to go on in our home. We tried force-feeding. We tried offering new things. We tried to trick him. We tried everything. The gagging was terrifying and the tantrums were unbearable. We told the pediatrician and were told he would grow out of it and to just keep offering foods. Finally at his 2 year old appointment they listened and said if he's not eating by Christmas, we'll refer him for therapy. I could have told them right there that second that he wasn't going to be eating by Christmas, but I waited. Finally in April he started seeing an occupational therapist who immedately diagnosed him with Sensory Processing Disorder. You better believe Dr. Google and I had already diagnosed him with that, so it came as no surprise. I had a second diagnosis in mind- ARFID (Avoidant/Restrictive Food Intake Disorder) and a joined a facebook group of parents with kids suffering from ARFID. I knew ARFID was a new and more unusual diagnosis so I didn't push it when it wasn't brought up at therapy or regular doctor appointments.
Our occupational therapist conferenced with our pediatrician and decided to send a referral to Marcus Autism Center in Atlanta for autism concerns. We got on a wait list for an autism evaluation. I talked to Marcus about my concerns about Cody eating and they suggested sending in a separate referral for feeding concerns to help him get into their Intensive Feeding Program. I jumped on that and within days we received a call from the feeding program. We knew the process would be slow at Marcus. It's a prestigious program with a wait list of 6 months- 2 years we heard. In October, the week of Hurricane Michael, we were asked to bring Cody for a physical at the Center for Advanced Pediatrics in Atlanta (part of Children's Healthcare of Atlanta). The next call was in December and we scheduled a team evaluation. On December 12th, my mom and I took Cody to the Marcus Center for a 3 hour evaluation with a nutritionist, a speech therapist, and a psychologist. I won't go into detail, but the result of that appointment was Cody being recommended for Intensive Day Treatment at the Marcus Autism Center. He also got a new diagnosis- ARFID! (Guess they should have consulted Dr. Mommy). Cody was added to the wait list for the feeding program. I thought we might hear from them sometime in the Spring or Summer, so you can imagine how surprised I was 2.5 weeks ago when they asked for Cody to begin treatment on February 7th. It has been a whirlwind since then. Buying a new car, writing 8 weeks of sub lesson plans, packing our home, finding a place to live for 2 months in Atlanta... all the while trying to live and soak up all the time I could at home with my family (especially baby Cole).
As you can imagine, all of this is incredibly hard to deal with on an everyday basis. We buy crunchies in bulk from amazon. We must take Cody acceptable food with us if we eat out of our home, which we rarely do with Cody. He does not like to be around or smell other food, so going out to eat is almost out of the question. Maybe the hardest part of Cody's ARFID is that food is not just nutritional, it's a part of our culture. What I wish for is to be able to take Cody out for icecream after a long week at school. To cook his favorite meal when he's feeling sad. To take he and Cole for Happy Meals to celebrate an achievement. To see him eat his birthday cake and not just blow out the candles. To see him enjoy snack time with his friends at school and church. Facebook can be difficult, because every picture of a toddler enjoying their birthday cake sparks jealousy in me. Friends post pictures of their children eating hotdogs, pizza, candy, cookies, and of course complain about their terrible diets. I would cry happy tears if Cody ever ate any of those things.
So here we are. Tonight is the first night of our "new normal." Tomorrow morning at 8 AM we begin treatment at Marcus. We will be here for 6-8 weeks. In the end I hope I can say that Cody eats more than 5 foods. I hope he drinks water. I hope he drinks from a regular cup. I hope I have more options to pack in his lunchbox. I will be posting as often as I can about his therapy at Marcus. I hope you'll follow along and keep Cody in your prayers.
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