Four days, five appointments...

The only way to summarize last week, is to list Isaac's appointment schedule. Thankfully, not all weeks are like this last one:

Monday: Swallow Study. I was dreading this and assumed it would be horrible for all parties involved. I admit, I'm generally a pessimist, although, Sarah is such an optimist, and I spend so much time with her that she has thankfully rubbed off some of that positivity on to me over the past few years. Anyway...radiology was insistent that Isaac wear a hospital tag. He can't stand those things. Just looking at one makes him mad. I didn't know he'd have to wear one, so I didn't bring a sock to cover it up, and they didn't have hospital socks in radiology and they weren't willing to locate one, so after we left the main desk I pulled it off of his ankle and he was happy. I brought the DVD player, but the battery ran out right before the study was about to start (go me!). We charged it for a few minutes, and it lasted long enough to get a few swallows from the syringe. Isaac loved the barium and defied all of my expectations. Oh, do you want to know what is completely absurd? They told me to bring him hungry. What kind of idiots are in charge of these tests? I mean, really, if the kid was stranded in the desert for days without food or water, I'm 99% sure he wouldn't voluntarily take a drink. I swear, if one of those morons could live with me a for a few days, they wouldn't tell me to bring my orally averse child, hungry.

He passed the swallow study...just like I told everyone he would. My goal is spend the next year weaning off of the feeding tube.

Tuesday: Dentist, for follow-up and cleaning. I really like Isaac's dentist. This appointment went as well as it could. Still nothing to do about his palate until he's six or seven.

Wednesday: GI Appointment. We've wanted Isaac's button changed for the last couple months and were finally able to get it done. As you can imagine, Isaac didn't like having his tube ripped from his stomach only to have a new one quickly shoved back in. Dr. Mahajan was amazed by how well Isaac looks, and asked, "what's your secret?" I told her about his blenderized diet, which she was even more amazed about and said that most parents don't do it because it too hard. Too hard to give your child real food? I get it, formula is easy, convenient (there are still days when he only has formula, due to travel, or when I'm at a wedding because Walter doesn't want to bother with blending food), and you know it will easily go through the pump and then g-tube. But if you really think about, if you consider yourself drinking formula day in and day out, and how that could potentially make you feel, I think you'd opt for real food too. She did check his vitamin levels and ran a full nutrition panel, guess what? Everything was perfect. And now I'm going to pat myself on the back.

Thursday: Mental breakdown, Feeding Therapy, OT Evaluation. So, I was planning to save my mental breakdown for Friday, once all of this madness was over. The entire week I felt like I was hanging on by a thread and constantly on the verge of tears. And then I took Isabella to my parent's house to hang out for the day so that she didn't have to go to two appointments in one day. I saw my mom, and you know how some times, when you see your mom, you can't keep all that you've been trying to keep in, in? Yeah, I lost it. My mom told me to leave the kids and go somewhere until we needed to leave for Isaac's appointment. I sat in a parking lot and cried. Pulled it together, picked up Isaac, and headed to feeding therapy. By the grace of God, he ate from a spoon. That was my gift for the day, and thankfully, I was given that gift because Isaac decided to let his true colors show for the OT Eval. It went something like this:

"Isaac, let's stack a tower! Can you take a turn after I take a turn?"
Isaac sat and stared with his angry eyes, pulling his hair, whipped out his foot and knocked over the tower.
"You're being silly. Let's build a tower!"
Angry eyes, avoiding eye contact aside from an occasional mean side glance. Kicked over tower, and scooted screaming to a different toy to bang his head on it. 
"Look Isaac! I'm going to make a picture, can you make lines like I make lines?"
Angry eyes, pulling hair, grabbed marker and threw it across the room.
Then he was supposed to make horizontal lines...he grabbed the marker, stabbed the paper a few times, then threw it.

So, after an hour we called it quits. At that point he was sitting in a corner pulling his hair, and staring at the floor. She suggested I attend a parenting class to deal with his behavior, and also recommended OT, weekly.

Well, we survived the week. We're all in one piece, though a bit mentally unstable over here.

Next time, pictures of Isaac walking!