Shutting down

Today seemed to be such a big day and it's only half done. 

This morning Liam was so excited to go to preschool. In fact at one moment he thought we were leaving without him and he got upset. When he realized he was going he was super excited. 

See that smile? That's Liam happy for school. 

Everyday we wait at the gate until the teachers are ready for us. This pic screams "let me in" lol. He was shaking the gate because he wanted in so bad. 

Every morning the kids go find their names on the table then stick the. To the Velcro strips. This helps them recognize their names. Liam had no trouble finding his. 

Today when I picked Liam up from preschool I could see in his eyes that he was shutting down. Today had just been too much for him. This was the moment I feared. I was afraid that every school day would be like this but turns out this was the first. He refused to talk. He looked at me but wouldn't make eye contact with me or anyone. He wouldn't wave bye. I asked him if he wanted me to carry him and he just lifted his arms. After picking him up he laid his head on my shoulder hiding his eyes in the crook of my neck. It broke my heart to see him like this. 

I put him in the car seat and he just sat there quietly until we got home. Still at home he refused to talk or play. I have him a bolus feed and took his shoes off. He soon fell asleep but the rest was short lived. He woke up extremely cranky and cried and screamed. Yes today had deffinatemy been too much. Unfortunately it wasn't over. I had to take him to his GI appointment. 

At GI Liam calmly and quietly petted Nemo. We got some good news. 

As far as his proportionate growth he is in the 3rd percentile. That just means his height, weight and head are more porportionate than he used to be which is good. His weight and height for age is still off the chart, or barely on I'm not quite sure. We agreed that as long as his porportionate growth is getting better then we wouldn't worry about the age to growth ratio. Brittany (Our GI's NP) and our GI are ok with his growth as long as it's porportionate. They'd love for the porportionate growth to be in the 10th percentile and I agreed to up his feeds to give it a shot. They don't expect miracles with him and understand that if he doesn't make it then he just doesn't BUT they said that if he continues this growth pattern then he will reach it by the next appointment in January. 

Liam's stoma is showing signs of prolong but the good news is that what had popped out of his stoma popped right back in when I pushed on his gtube. She said this was ok as long as it popped back in and didn't stay out. If it stays out then we have a problem she said. The skin around his stoma is breaking down 😔 and I have to keep a close eye on it. If it shows sign of infection I have to call right right away. 

They gave me samples of a protective cream to keep this from getting worse. I have to use it and neosporin. She said that it should be better in about a week and a half. 

On other good news she gave me more gauze because home care isn't sending enough and she's contacted them and sent a script for them to tripple the amount of gauze he's getting now. She said I should not have to pay for it ever. 

What an eventful half day and that was only for Liam lol. I feel blessed that Liam has such great care providers that actually care.