Today was our appointment at the Kennedy Krieger Institute. All I can say is WOW! What an amazing place! But before we get to the details of that appointment, I would like to first share some of the journey here to Baltimore.
We left out on Saturday morning. We stopped in Memphis, Tennessee, and took the kids to Beale Street. While there we ate at the most Memphis kind of place...The Pig. What is better than pulled pork in Memphis? In this bar-diner atmosphere blaring the Blues, I figured we were really in for it as Kaydence Grace is not a fan of loud places. Turns out the kid likes the Blues. Hard core, did not even plug her ears, likes the Blues kid! I can work with this. We made sure to ride in a cheesy horse-drawn Cinderella carriage for Abigail. Abigail's Memphis observation: Why does everyone in the city want money? Homelessness and begging has been a little hard to explain to our small-town kids.
Sunday we traveled on to Knoxville, home of the Tennessee Vols. It is also home to Neyland Stadium. Talk about some fun pictures. There was a set of vertical signs on the street lamps that said, "Keep Neyland Clean" and we decided that Wade needed a picture under one of those. It shall serve as reminder to him to keep our house clean too.
Some of the things that I have heard on this road trip have been comical. Things like, "Abigail! Quit rubbing your feet on the snacks!" Or, "I was going to Snapchat this, but there's NO service here!" We've also had a lot of issues surrounding passing gas and stinky feet. I kind of think my kids need a doctor visit concerning their bowels and their feet. When the shoes come off in the car, you can smell it. It's so bad I nearly have to hang my head out of the window as I gag. What I ever did for entertainment before kids, I cannot remember.
So Sunday we journeyed through The Great Smoky Mountain National Park. It is like time must stand still while you're in there because after we drove through the mountains for a couple of hours we still had about 8 hours ahead of us to Baltimore. It was a beautiful drive through the park and I wish we could have stopped at a few places more, but we had to get to Baltimore. If I ever get the chance to go back, I'm totally going to Cherokee. I did not know there was an Indian Reservation in the Smoky Mountains. We finally reached the main destination at about 11:30 at night. Oops. A lot later than I anticipated but sometimes you have to stop to eat and use the potty.
So for the part I'm sure you're actually wanting to read about...Kaydence's appointment at Kennedy Krieger Institute. The point behind KKI is that they use a team approach of integrated services and do intensive therapy clinics, which means that a patient goes through a lot of therapy for several days clustered together. After I read about another CMV mom taking her daughter to KKI for physical therapy help, I contacted her for more details and thought, "Why not?" When I contacted KKI, they decided that the first place we should start is with feeding therapy, because Kaydence needs some help there. Her diet is limited to soft mashable foods without much texture. This makes eating miserable sometimes and it is always super frustrating for this momma.
We met with a team consisting of a speech therapist, a pediatrician, a nutritionist, and a behavioral psychologist. They asked me about her daily diet and food preferences. The pediatrician examined her and we did talk about that no one has specifically said she has cerebral palsy, but that yes, she does and if we actually say it, it can open some doors as we ask for help dealing with it. Then I prepared her choice meal of banana and peanut butter smashed together and fed her. The speech therapist wanted to see how she did with a stage 3 baby food with similar texture. As soon as I held out the spoon, her eating was over. She didn't even want her banana anymore because she knew we were trying to introduce other food with it. The child is smart. She caught on to this trick when she was in feeding therapy before and that was a while ago!
The team went to discuss what to do to help Kaydence and then came back to discuss it with me. First of all, they recommended some ways to make sure she gets extra calories. Her BMI is very, very low. She needs to gain weight. I told them that if Kaydence would follow my lead, she would have no problems with this! Then they said that they want her to come back for their intensive therapy program. It is a 6 to 8 week program, with her in therapy all day, Monday through Friday. I will observe her through a window as they work with her and she won't know mom is there. Then, when they work through some of her issues, a plan will be developed and then I will learn the tools necessary for a transition home. They will even make an instructional video for others who are caretakers in her life. There will be a lot of behavioral psychology involved in her treatment plan as they witnessed that she has some skills to eat, but her preferences and attitude aren't helping her use those skills. In other words, she is hard-headed and they have to figure out how to work around this. (Imagine that! Ha!) There is a current wait list for this program of 4 months. I have 4 months to get some weight on this kid and then we get back up here to get her eating a little better.
Eight weeks may seem like a long time to be gone in the fall, but to get her eating better, it is well worth the investment of time. Also, in the grand scheme of life, it is a drop in the bucket. Her independence in living is so important. I had a hard time deciding to leave my job this year, but here is God reaffirming to me, that it was the correct decision. There is no way I could teach and do this with her. I am thankful for this opportunity AND for this road trip with the whole family.
Now...the Neylands take on Washington, D.C., and it may never be the same again!
We left out on Saturday morning. We stopped in Memphis, Tennessee, and took the kids to Beale Street. While there we ate at the most Memphis kind of place...The Pig. What is better than pulled pork in Memphis? In this bar-diner atmosphere blaring the Blues, I figured we were really in for it as Kaydence Grace is not a fan of loud places. Turns out the kid likes the Blues. Hard core, did not even plug her ears, likes the Blues kid! I can work with this. We made sure to ride in a cheesy horse-drawn Cinderella carriage for Abigail. Abigail's Memphis observation: Why does everyone in the city want money? Homelessness and begging has been a little hard to explain to our small-town kids.
Sunday we traveled on to Knoxville, home of the Tennessee Vols. It is also home to Neyland Stadium. Talk about some fun pictures. There was a set of vertical signs on the street lamps that said, "Keep Neyland Clean" and we decided that Wade needed a picture under one of those. It shall serve as reminder to him to keep our house clean too.
Some of the things that I have heard on this road trip have been comical. Things like, "Abigail! Quit rubbing your feet on the snacks!" Or, "I was going to Snapchat this, but there's NO service here!" We've also had a lot of issues surrounding passing gas and stinky feet. I kind of think my kids need a doctor visit concerning their bowels and their feet. When the shoes come off in the car, you can smell it. It's so bad I nearly have to hang my head out of the window as I gag. What I ever did for entertainment before kids, I cannot remember.
So Sunday we journeyed through The Great Smoky Mountain National Park. It is like time must stand still while you're in there because after we drove through the mountains for a couple of hours we still had about 8 hours ahead of us to Baltimore. It was a beautiful drive through the park and I wish we could have stopped at a few places more, but we had to get to Baltimore. If I ever get the chance to go back, I'm totally going to Cherokee. I did not know there was an Indian Reservation in the Smoky Mountains. We finally reached the main destination at about 11:30 at night. Oops. A lot later than I anticipated but sometimes you have to stop to eat and use the potty.
So for the part I'm sure you're actually wanting to read about...Kaydence's appointment at Kennedy Krieger Institute. The point behind KKI is that they use a team approach of integrated services and do intensive therapy clinics, which means that a patient goes through a lot of therapy for several days clustered together. After I read about another CMV mom taking her daughter to KKI for physical therapy help, I contacted her for more details and thought, "Why not?" When I contacted KKI, they decided that the first place we should start is with feeding therapy, because Kaydence needs some help there. Her diet is limited to soft mashable foods without much texture. This makes eating miserable sometimes and it is always super frustrating for this momma.
We met with a team consisting of a speech therapist, a pediatrician, a nutritionist, and a behavioral psychologist. They asked me about her daily diet and food preferences. The pediatrician examined her and we did talk about that no one has specifically said she has cerebral palsy, but that yes, she does and if we actually say it, it can open some doors as we ask for help dealing with it. Then I prepared her choice meal of banana and peanut butter smashed together and fed her. The speech therapist wanted to see how she did with a stage 3 baby food with similar texture. As soon as I held out the spoon, her eating was over. She didn't even want her banana anymore because she knew we were trying to introduce other food with it. The child is smart. She caught on to this trick when she was in feeding therapy before and that was a while ago!
The team went to discuss what to do to help Kaydence and then came back to discuss it with me. First of all, they recommended some ways to make sure she gets extra calories. Her BMI is very, very low. She needs to gain weight. I told them that if Kaydence would follow my lead, she would have no problems with this! Then they said that they want her to come back for their intensive therapy program. It is a 6 to 8 week program, with her in therapy all day, Monday through Friday. I will observe her through a window as they work with her and she won't know mom is there. Then, when they work through some of her issues, a plan will be developed and then I will learn the tools necessary for a transition home. They will even make an instructional video for others who are caretakers in her life. There will be a lot of behavioral psychology involved in her treatment plan as they witnessed that she has some skills to eat, but her preferences and attitude aren't helping her use those skills. In other words, she is hard-headed and they have to figure out how to work around this. (Imagine that! Ha!) There is a current wait list for this program of 4 months. I have 4 months to get some weight on this kid and then we get back up here to get her eating a little better.
Eight weeks may seem like a long time to be gone in the fall, but to get her eating better, it is well worth the investment of time. Also, in the grand scheme of life, it is a drop in the bucket. Her independence in living is so important. I had a hard time deciding to leave my job this year, but here is God reaffirming to me, that it was the correct decision. There is no way I could teach and do this with her. I am thankful for this opportunity AND for this road trip with the whole family.
Now...the Neylands take on Washington, D.C., and it may never be the same again!
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