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.