Wednesday, August 27, 2014

Sebastian's Scratched Cornea & Homemade Play-doh!

I took Willow & Sebastian to the Discovery Center today for a little over an hour, basically to give the aide more one-on-one time with Judah. We got back home just in time for Judah's massage, which went really well. The aide told our massage trainer, "I haven't seen him make that much eye contact since I've been here!!" He was sucking my finger & playing with my hair. He hugged the trainer as soon as we were done. Then he hugged me.

The aide chased Judah around this morning, trying different ways to get him to talk. She didn't give up. She lifted him into the air & jumped with him, which always helps. I gave her some ideas other than "the notebook" (the big folder of activities that I created for the aides to use with Judah). She got him going pretty quick though, right after she had just told me that he didn't want to talk no matter what she did. But point is, she didn't give up. And he said more today than he likely ever has. He made eye contact, responded to his siblings a couple of times!?!?!!, talked in sentences some.. "Daddy, Let's go!!!" (throwing his arm into the air as he marched into the building where the doctor's office was). The aide said, "You're a goofball!" and he said, "Yeah" and smiled as she pushed him on the swing. She pushed all 3 of them on the swings at the same time (she does this sometimes). She took pictures because I was on the phone (on hold for nearly 20 minutes with Sebastian's doctor's office!!). She took pictures when they all 3 went down the slide together too. She knew I wanted the swing picture because I had just mentioned it to her yesterday when she was pushing them all at the same time & I didn't have my phone or camera with me.

The aide taught the kids how to make Play-doh. Judah was only interested when he saw the finished product. Then he ran to the kitchen to check it out!! 2 cups flour, 1 cup salt, 1 cup water & some vegetable oil for texture. It turned out really well!! The kids all played at the table with the Play-doh. I printed up some empty faces & bodies that I had found online, quickly laminated them & handed them to the kids to use. They put eyes on, smiles on, etc. Willow put dots of Play-doh all over one of the bodies, telling me that it was his pajamas, haha. When I put eyes on the body she had, she said, "He can't see!!"

Last night I was laying in bed with Willow. She was moving her hands in the air. I asked her what she was doing & she said that she was building a snowman. She continued building. Then I put my hands in the air, building my own snowman. She looked over at me and said, "What are you doing?" hahaaa

When I give Willow toast with jelly it is "piece of jelly" to her. Today I gave her a peanut butter & jelly sandwich. Sebastian moved her plate over. "Bastian moved my piece of jelly!!" I love it. She probably heard "piece of toast with jelly" at some point and a couple of the words fell out - that's my guess. Her hair is her "haircut". Don't mess up my haircut! Don't touch my haircut! Her fingers are still her "niggas".

Sebastian cut the cornea of his eye somehow while making the Play-doh. Maybe salt got in his eye & he rubbed it?? We went to the doctor about 4 hours later when I realized that the skin around his eye had gone from light pink, to red, to purplish in 4 hours. When it was Sebastian's turn he went to the scale, took his shoes off & the lady asked him how he hurt his eye. "Well, it all started when I stepped on the ice floor.." It was so funny. Everything he did at that visit was funny. I asked him which doctor he liked better.. his doctor or Judah's doctor. He said very thoughtfully to me, "Well, I don't really like any of them." hahaa Which would make sense for a kid to say!!

The doctor needed to brush the corner of Sebastian's eye with iodine and tilt his head a bit so it would go into his eye. Holy hell. Sebastian freaked out every minute of this appointment, from his ears being checked to the doctor shining his light into his eyes. He was almost hysterical (not funny hysterical). Then the iodine, just the MENTIONING of the iodine and he is crying & telling the doctor that he was scared & didn't want it. He freaked out so much that the doctor couldn't even get the iodine close to his face. Eventually the doctor left the room so I could try & talk Sebastian down (Which I actually did a decent job of! Usually Scott does that job because he's better at it.).

The doctor came back in.. At this point I had promised Sebastian 2 stars on his chart, that he could stay up late & watch a movie the other kids weren't allowed to watch & ice cream when we got home. Now I can see why I was helpful in talking him down, sigh. Anyway, he freaked out again & again. Finally the doctor says, "Are you ready?" and Sebastian says, "I guess.." More screaming, turning his head away, pushing the doctor's arm away with his hands.. etc. The doctor was finally able to get the tiny iodine brush near the corner of Sebastian's tightly shut eye. "Is it done yet Molly?!!!! Is it done yet?!?!?" He screamed this over & over. I finally said that it was, but it wasn't. The doctor couldn't get the iodine in. We tried again, still very traumatic for Sebastian, but the doctor was able to get the iodine in that time. At this point Sebastian had an orange circle around his eye, his tears were fluorescent yellow as was the drainage from his nose. The doctor told him that this would all glow in the dark - which it did not, we tried later at home.

So he takes 4 eye drops a day for 3 days. We go in Fri for a follow-up. We did one eye-drop tonight which was pretty traumatic, a lot of the same behavior, but went probably 25% better than the doctor appointment experience. The doctor taught me a trick - drop the 2 eye drops near the corner of Sebastian's eye, while he is lying back with his eyes closed. Then tell him to open his eyes and turn his head - and the eye drops roll in! Had we known this long ago I'm betting Judah's twice a week horrid eye-drop experience would have been so much better. That experience is even worse because we have to hold him down. I feel so awful about that one. I'm sure Sebastian probably assumed he would be going through the horrible, awful looking experience that Judah often went through, when he learned he had to do eye drops. Judah looked at Sebastian's eye drop bottle a couple of times and then he sat at the end of the couch as if he was supporting Sebastian. He knew exactly what that bottle meant. I can say "eye drops" and he knows exactly what it means.

I'm tired of writing. I have to go re-do the aide schedule that I spent hours on last night. Apparently I added the hours wrong and gave us more than we are allotted.

Judah was repeating a lot today. The massage trainer said, "Hey!" to him when he playfully spit at her. He said in return, "Hey!" and smiled. Verbally it was really an amazing day for him & I accredit it all to his aide who pushed him every minute of the way to talk today. She wasn't even feeling well at one point - she had to lie down & have bread & milk. She's pregnant & her blood sugar gets low sometimes, which was what was happening. I haven't mentioned that she is super-duper smart. She is teaching the kids so much!

Judah didn't have nebulizer, folinic acid in the b-12 shot, no miralax, no beta, no eyedrop, no fish oil. Nebulizer med should come in tomorrow, yay!! I think that has helped progression - glutathione, it's supposed to be really good for the brain.

Judah had one big bm. (bowel movement)


  1. It sounds like Judah is really making progress. You and Scott do so well with all of your kids.