We woke Jack twice in the night to give him his pain meds. I found him in his room this morning at 6:45 playing in his bed awaiting the time he could come out (he can't emerge from his room until 7am). He seemed fine. We have noticed that his voice sounds thick and he is jutting out his chin to compensate for the odd sensation he feels with the swelling and tightness.
I think today was tougher than yesterday. Jamie looked at Jack's throat tonight and saw that the scabs were changing color (indicative of healing). This also means that his skin is tightening and it will begin to be more painful. I followed him around today, begging him to drink. If he stays hydrated, that will prevent bleeding and keep his comfort level as good as possible.
Today was Day 2. Jackson was already tired of ice cream/ popsicles and wanted real food. Additionally, he didn't want to watch TV and movies all day. He started jumping around, batting at a beach ball with me. I kept telling him to calm down and that he couldn't be wild. Poor guy - he has so much energy but his throat hurts. He wants to eat but can't. I felt like the bad guy - when I would turn him down in terms of food or activity level he would say he wanted his daddy. AAAAAHHHH!
We played games and then found some recipes in his "Mommy and Me" cookbook. We made a list of things for a smoothie and a chocolate dessert then headed to the store. After shopping and picking Jonathan up from school, we made the smoothie. I did not realize I would need to crush the raspberries through a sieve/strainer to extract seeds. I did this with my fingers for a cup of raspberries. Then, I peeled and cut up 10 small peaches. As we blended it all and I prepared to serve my oldest, he ran away holding his mouth refusing to try it. Okay... Then I made the chocolate dessert. You make chocolate chocolate chip muffins (I made triple chunk brownies in the muffin tin). If the muffins have tops (mine didn't), take them off and replace them with a scoop of ice cream. Melt a caramel candy bar with half and half. Then pour the caramel mixture on top of the ice cream. Very good! Jackson ate this.
Tomorrow is the day that I have heard is really tough. I will continue to chase him around with the pain meds and fluids. I am thankful we are getting this over with now and not later!
The latest on Jonathan is that Jamie has named him "Moyer the Destroyer." I can't remember if I have mentioned that before or not. Jonathan destroys everything in sight. He throws things in the trash, takes them out of the trash, rips up any paper he can lay hands on, tears toys off shelves and throws them against the wall, chews things up, and tries to take any toys with which his brother is occupied. In general, he is a tyrant these days. Then, all of a sudden, he is the "sweetest" child you ever met. Kind of like Dr. Jekyll and Mr. Hyde. Nice/scary/nice/scary...
Jonathan's OT, Michael, came to our house Monday to help me with feeding Jonathan at home. I was feeling insecure and as if I was being tested. I do not look forward to meals because they are miserable. Jonathan used to eat everything under the sun and then just quit about a year to a year and a half ago. Who knows why? We don't. He will eat cheerios with milk, pancakes, applesauce, yogurt, protein bars, peanut butter, any kind of dessert, grapes, craisins, apple, crackers, chips, etc.
The idea has been to try to incorporate other foods and I have been unsuccessful with vegetables. I thought I was supposed to hide a whole piece of food in applesauce or yogurt but that was incorrect. Michael showed me to take what he already eats and then add other things - the other foods need to be mashed or ground up. I have a food grinder from when I was a baby. He took it and ground lunch meat. Then we added it to Jonathan's applesauce, a little at a time. We tried to find Jonathan's tolerance. Then, after two bites, we would cheer and reward him with bubbles or food. It worked like a charm. That day at lunch we got him to eat lima beans and lunch meat in his applesauce. That evening I got him to eat green beans and lunch meat again - wow! I thought grinding up his food would be regressing to baby food but the idea is to get him to tolerate the taste. Then slowly add more. Then add bigger pieces until you are up to the food itself. There were times Jonathan gagged but mostly he did well.
Michael is all business - kind but firm. He made Jonathan use signs instead of scream. He told Jonathan to keep his "hands down." Jonathan likes to smear food all over his face. Michael said this could be a way he prolongs his feeding time or avoids eating more. So saying, "Hands down!" keeps his hands out of the way and a much cleaner eating experience. Again, I felt badly because I had been letting Jonathan be messy, thinking it would go away with time. I never thought it could be a manipulation of sorts.
It is tough to deal with therapists sometimes because I feel like they are advising me on something I should already know. I find it humiliating at times that their advice is so obvious and simple. However, they are the experts and I need them so I listen!
Here are some videos of Jonathan tonight in the bath tub:
Jonathan using sign language.
Evaluation of knowledge of body parts while bathing.
Continued "body parts exam" in the bath tub. Sorry about the view...
Julie:)
juliewarren@mindspring.com
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