So after tomorrow we are on the two-week plus a couple of days countdown. I cannot even believe it. Time has felt so slow some days, and on others it seems as if time is just flying. I've had quite a bit of thinking time most days. Probably too much thinking time. A strict part of my happiness level depends on avoiding political garbage. Unfortunately most every hospital television is on CNN, but I think they need to rename it to something more like - Suck All Happiness Out of America television network. Pot Stirrer television might also be fitting. Other networks could also fall into this category. My favorite thing to do when we get in is turn on TV Land or HGTV because it reminds me of a time when television was fun to watch. Shows supplied laughter and didn't just show people running each other down or solving crimes with some of the nastiest tutorials on how to murder someone. I've decided that the only way to bring up a better generation of kids, as a parent, is to turn it all off. Allow your kid to watch a couple of cartoons and turn the rest off. Even Disney. It perpetuates the problem of our babies growing up too fast with their shows. Turn it off America! Save our kids. Save ourselves.
So after that tangent of thought, my happiness level is at an all time serious low. I like to live on the edge of funny, but my funny is gone right now. It's exhausting each day around here. Not like I'm moving all day exhausting, but like I'm sitting all day exhausting. But I am busy. It's weird. Kaydence however tries really hard to be funny. As a matter of fact, she has been dubbed by the other kids as "The Giggler." She giggles in the playroom, but when she is with me, it's like working with multiple personalities. Crying and fit-throwing one minute and laughter the next. She is every man's nightmare of emotional women.
I have noticed for a few months now that Kaydence has had a white patch at the back of her gums, just where her 6-year-molars should come in. Well guess what. I now see a tooth on one side. No wonder the kid has been so grumpy! Also to add to the grumpiness scale, she and I both woke up Tuesday morning with the worst case of fever blisters in a long time. Her worst EVER! They take up quite a bit of space on her pretty little chin. Because this is viral, she has been banned to the leper colony. She and I play in the downstairs playroom. Tuesday, I actually cut our day short and we left after lunch because I was feeling so bad. The staff in the playroom has been sad, but they have given us the toys she likes to play with and we go play in a room that has mats that are easy to clean and disinfect. Fever blisters stink. Hopefully tomorrow we are able to return to the playroom with her friends.
A bright spot today, and actually during this trip, is that I know that Kaydence has some potty training skills. Sister is not a public pooper. She does not poop at school or at the hospital. When we get home, however, she immediately poops. Today it was just us, and she pooped. I realize that she really knows the difference and if she can hold it until she gets home, then we can sit our little hiney on a toilet seat. Sorry some of you probably do not want to read about pooping, but readiness is a big deal.
She has had a little hiccup in her vomiting, but we have adjusted her lunch to where she eats only five ounces of food and 4 ounces of liquid. At her other meals, she eats six ounces of food and drinks 6 ounces of liquid. She eats like an adult almost. Now texture, that is another story. I had hopes that she would move up to a different texture while we are here, but she just had a ton of work to do to catch up. I've just not done my job well enough for her since we stopped going to Dallas when she turned three. I did not seek out extra therapy outside of what she gets at school and I should have, but geesh! You get so dang tired of driving long distances for EVERYTHING! I drive kids for all kinds of activities and I. AM. TIRED. Leon County kids are severely under served in terms of therapy options. The other side to that coin is that I have two other kids who deserve to get to participate in activities they love as well. It's hard to find a good balance, but when we get home, we MUST find it. I've seen what therapy everyday can do. Now we can't go everyday because it's expensive and insurance only lets you have so much therapy before they cut you off, but we will do what we can. I've seen other kids here whose parents told me they looked just like Kaydence Grace. On a walker, non-verbal, eating issues, and now they can walk and talk and still need a little help with the eating. Most of the people I've met are one their second round here at Kennedy Krieger. I anticipate she may need a tune up some day, but I hope we can tune up in the summer.
Kaydence is also still working on feeding herself. She does not care to do that. She would just rather you feed her. {sigh} We will keep working on that too. I am at the point where they let me feed her half the meal and give her all of her drinks. We do pretty well most meals with minimal intervention needed. When we leave the therapists will give us a home program to work on. The only other time when we had a written home program, I think, was PT at Children's. I'm excited to have homework because she needs it. I keep learning everyday, and I will push Kaydence everyday.
Part of Kaydence's meal rules is that she gets to watch Frozen, her preferred mealtime movie, so we limit screen time otherwise. That one movie is a privilege and she eats better with it on. I laughed today as I realized, working in a behavior therapy program with my daughter, that Elsa just needed some behavioral therapy herself. We give praise, not negative remarks. Instead of, "No! Don't do that!" we say, "Great job taking that bite!" If she doesn't do great, we swiftly make sure she takes the bite even if she spits it out, and say nothing. Elsa just needed a "good job not freezing your sister today" instead of instilling fear of being herself. It's a lot to think about if you apply it to all kids. It's actually a behavioral technique we teach in parenting classes. Praise works wonders in child guidance. (Deep thinking on an animated film, but I have too much thinking time!)
I can't wait to see how our weekend goes because we will be on a full eating schedule from the hospital. Here's to another week down and just a couple more to go!
So after that tangent of thought, my happiness level is at an all time serious low. I like to live on the edge of funny, but my funny is gone right now. It's exhausting each day around here. Not like I'm moving all day exhausting, but like I'm sitting all day exhausting. But I am busy. It's weird. Kaydence however tries really hard to be funny. As a matter of fact, she has been dubbed by the other kids as "The Giggler." She giggles in the playroom, but when she is with me, it's like working with multiple personalities. Crying and fit-throwing one minute and laughter the next. She is every man's nightmare of emotional women.
I have noticed for a few months now that Kaydence has had a white patch at the back of her gums, just where her 6-year-molars should come in. Well guess what. I now see a tooth on one side. No wonder the kid has been so grumpy! Also to add to the grumpiness scale, she and I both woke up Tuesday morning with the worst case of fever blisters in a long time. Her worst EVER! They take up quite a bit of space on her pretty little chin. Because this is viral, she has been banned to the leper colony. She and I play in the downstairs playroom. Tuesday, I actually cut our day short and we left after lunch because I was feeling so bad. The staff in the playroom has been sad, but they have given us the toys she likes to play with and we go play in a room that has mats that are easy to clean and disinfect. Fever blisters stink. Hopefully tomorrow we are able to return to the playroom with her friends.
A bright spot today, and actually during this trip, is that I know that Kaydence has some potty training skills. Sister is not a public pooper. She does not poop at school or at the hospital. When we get home, however, she immediately poops. Today it was just us, and she pooped. I realize that she really knows the difference and if she can hold it until she gets home, then we can sit our little hiney on a toilet seat. Sorry some of you probably do not want to read about pooping, but readiness is a big deal.
She has had a little hiccup in her vomiting, but we have adjusted her lunch to where she eats only five ounces of food and 4 ounces of liquid. At her other meals, she eats six ounces of food and drinks 6 ounces of liquid. She eats like an adult almost. Now texture, that is another story. I had hopes that she would move up to a different texture while we are here, but she just had a ton of work to do to catch up. I've just not done my job well enough for her since we stopped going to Dallas when she turned three. I did not seek out extra therapy outside of what she gets at school and I should have, but geesh! You get so dang tired of driving long distances for EVERYTHING! I drive kids for all kinds of activities and I. AM. TIRED. Leon County kids are severely under served in terms of therapy options. The other side to that coin is that I have two other kids who deserve to get to participate in activities they love as well. It's hard to find a good balance, but when we get home, we MUST find it. I've seen what therapy everyday can do. Now we can't go everyday because it's expensive and insurance only lets you have so much therapy before they cut you off, but we will do what we can. I've seen other kids here whose parents told me they looked just like Kaydence Grace. On a walker, non-verbal, eating issues, and now they can walk and talk and still need a little help with the eating. Most of the people I've met are one their second round here at Kennedy Krieger. I anticipate she may need a tune up some day, but I hope we can tune up in the summer.
Kaydence is also still working on feeding herself. She does not care to do that. She would just rather you feed her. {sigh} We will keep working on that too. I am at the point where they let me feed her half the meal and give her all of her drinks. We do pretty well most meals with minimal intervention needed. When we leave the therapists will give us a home program to work on. The only other time when we had a written home program, I think, was PT at Children's. I'm excited to have homework because she needs it. I keep learning everyday, and I will push Kaydence everyday.
Part of Kaydence's meal rules is that she gets to watch Frozen, her preferred mealtime movie, so we limit screen time otherwise. That one movie is a privilege and she eats better with it on. I laughed today as I realized, working in a behavior therapy program with my daughter, that Elsa just needed some behavioral therapy herself. We give praise, not negative remarks. Instead of, "No! Don't do that!" we say, "Great job taking that bite!" If she doesn't do great, we swiftly make sure she takes the bite even if she spits it out, and say nothing. Elsa just needed a "good job not freezing your sister today" instead of instilling fear of being herself. It's a lot to think about if you apply it to all kids. It's actually a behavioral technique we teach in parenting classes. Praise works wonders in child guidance. (Deep thinking on an animated film, but I have too much thinking time!)
I can't wait to see how our weekend goes because we will be on a full eating schedule from the hospital. Here's to another week down and just a couple more to go!
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