One Day More

First off- sorry that I haven't kept this blog up the way I intended to.  My need to "chillax" has outweighed my willingness to rehash our day on the blog.  

I guess the title of this blog gave away our big announcement.  Tomorrow is our last day of inpatient treatment at The Marcus Center!!! Cody and I have a bit of senioritis and are "over it." We're so ready to go home!! John was here earlier this week and finished his training on self-feeding.  Cole was not able to come, because he got very sick.  My mom kept him for 8-10 nights in a row. I lost track.  If Cole was able to come up to Marcus, we would have had some sessions where the whole family eats together.  We may do some of that in outpatient therapy over the next few months.  Cody's progress has been GREAT! He's drinking from a regular toddler-sized cup, but still prefers the little pink cups with the cutout.  He's self-feeding himself at every meal with very little issue. At the end of last week he got extremely constipated from refusing to poop and started throwing up repeatedly at his meals.  There was just no where for all that food to go, I guess! They sent us home on Friday with orders to discontinue protocol meals and allow him to eat him "preferred food" until everything was "back in order" so to speak.  Cody drinks Miralax daily, but it's been difficult to get it in him, since he no longer drinks juice with dinner.  I'll spare you the details of everything that went on over the weekend, but we got everything cleared out and were able to resume protocol meals.  Since then he's had mostly good days.  He's definitely over "food school" and is looking forward to being home and going to the beach with our family. 

The plan we made earlier this week in knowing he'll be finishing up Friday is to go down to 3 meals rather than 4 during the school day.  This will more closely mimic his actual schedule and intake after discharge.  Knowing that Cody prefers Mommy or Daddy to feed him more than anyone, I agreed to feed two out of the three meals during the day and take my "break" during his lunch meal.  Today instead of hanging out at Marcus from 9:25 when breakfast ended until 11:45 when lunch began, we went to Target, the Pet Store, Dollar Tree, and Panera.  It was a nice break.  We also skipped our nap and went to the playground instead.  See... senioritis.  The schedule won't be quite as nice tomorrow, because they are going back to 4 meals.  Cody has been working on self-scooping during lunch, but that means he gets a lot fewer grams of food.  He's not able to scoop quite as much as the grown-ups feeding him yet.  So they decided that tomorrow he will do self-scooping during snack time and they'll lower the gram cap for lunch to accommodate how much he feeds himself at snack.  

Today they brought me some paperwork to fill out for Cody's discharge.  I pretty much wrote a book in the comments section of the life impact survey.  The good. And the bad. Obviously our lives have been greatly affected by Cody's time here in Atlanta.  Have these effects made our lives easier? No.  We are so glad to see Cody eating a wider variety of food.  That is the most obvious positive change. He's gained 2 lbs here and grown in height also. He's also drinking from a cup that does not have a sippy spout- another great change! But this treatment has created a whole new level of work for us as parents.  We're now tied to 30-40 minute sessions multiple times a day where we must follow certain procedures and protocols to keep Cody's therapy going.  He's lost the ability to eat breakfast and dinner independently as he was doing before, because he can't feed himself the protocol meals, which we are calling "school food." We've lost the ability to sit down and eat our meals at the same time as Cody and Cole, which we mostly had before treatment.  Cody's teachers at school will not see any obvious change from therapy, because he will continue to eat exactly the same things during the school day that he ate before we came to therapy.  We've added to our load the need to buy 16 brand specific foods, puree them according to certain recipes for each food, store them in our limited freezer and fridge space, and wash those annoying little cups every night.  Cody will need 24 small containers of food each weekend and 40 throughout the week.  We have to do several oral motor exercises with Cody daily to keep up his progress on learning to chew. To keep this a positive thing, we have to see this as step number one in a long process to get Cody eating like a "normal" child. 

Therapy has changed my perspective on Cody's eating.  As I always have, I see him as being afraid of food.  Prior to treatment I thought that's all this was-- a fear of new things, a fear of new tastes, an unwillingness to change, wanting to stick with routines, etc.  But now I also see that his fear comes from an inability to physically chew and eat food.  If he had progressed as a "normal" baby to 4 year old, he would have naturally developed this ability.  But for whatever reason he was not willing to try foods and never learned to chew them properly.  I guess this is a chicken and the egg question.  Did he not want to eat food, because he didn't understand how to chew? Or did he never learn to chew, because he wouldn't try foods that needed to be chewed?  All the things Cody will eat do not require a great deal of chewing.  They dissolve easily or are already pureed.  This really struck me when I fed him corn one night that I had prepared here at the apartment.  It was the first time he had corn outside of the Marcus Center and I knew the texture was much thicker than I had served him at "school."  I knew I had followed the recipe, though, so I went ahead with it.  That thicker texture and maybe a few extra corn hulls that didn't get strained out caused him to throw up two times until I finally took the corn out of the meal that night.  He just can't handle the texture.  He won't just pick up a chicken nugget and eat it, because he can't. Not right now.  There is a process for learning to chew that we are going through.  Once he's passed certain levels in his oral motor therapy he'll progress from pureed food to less pureed food. :)  Eventually he will eat whole foods, but I do not expect that to happen within the year.  

Cody's outpatient therapy will begin April 18th.  He will come every other Thursday for the foreseeable future for therapy.  My mom, John, and I will rotate bringing him up on Wednesday afternoons, spend the night, have therapy on Thursday, and drive home.  We are hoping to stay at the Ronald McDonald House for some of our overnight stays.  

I just remembered that Cody's diagnostic interview for ASD happened and I didn't update on that.  John was able to be here for the appointment, which took place two floors up from feeding therapy.  It lasted over an hour and mostly was just the doctor asking John and I a LOT of questions about Cody while he played.  The doctor got enough information to decide that she wants to see Cody again for the next step in the diagnostic process.  I mentioned to her that I feel like Cody's diagnosis might be anxiety and sensory processing disorder rather than ASD.  She agreed that it very well could be that.  She wants to learn more about Cody's social behavior at the next appointment.  She suggested reading up on high functioning autism or Asperger's, because that's what we would be dealing with if they decide he's on the spectrum.  

Tomorrow will be Cody's last day at clinic and I'm pretty sure there will be a small celebration for him at the end of the day.  My parents are going to Cairo tomorrow to pick up Cole from daycare and take him to St. Simons.  John will drive up to Atlanta after school and spend the night with us here tomorrow night.  We will load the car as soon as we can on Saturday and drive home to Cairo.  We'll unpack the car and repack for the beach. We'll leave for St. Simons from Cairo as early as possible on Sunday.  I will finally see Cole!! We'll stay at St. Simons with my mom, dad, brother, and nephew until Thursday.  We'll spend the rest of Spring Break in Cairo.  I will hopefully get to work a couple days, so I can be prepared when school starts back next Monday.  But first... I'm setting my sights on getting through tomorrow and celebrating with a big slice of red velvet cheesecake from a place called CheeseCaked that's right around the corner.  My sweet reward.