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-

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.