Journal entry by Marissa Wessels —
Wow! It's been quite some time since a big, up to speed, update!
Layla and I spent this past week in Milwaukee. Tuesday was a gastric emptying test. After fasting, she had to eat eggs, saltine crackers, and 4 oz. of water. She said the eggs were terrible. They are actually smoked, and come pre packaged in a bag, cooked in a microwave. Seriously gross. Every 15 minutes her breath was measured by breathing through a straw into a test tube. We did this for four hours. She felt sick and tired. Though she tolerated it well, it wasn't fun. We also had to do a whole slew of questions and a couple heart monitor tests. If she was able to complete this test without throwing up or quitting, she would be able to enroll in a study with the neurostimulators again. Yay!!
The other test she had this week is called satiety test. She, again, had to fast, and then drank 30 ml of Ensure every minute until she could not anymore. She went 11 minutes. She almost quit after a few minutes, but they want you to push through the nausea until you are stuffed full. She thought she was going to burst and said after, "I went way too far." She's such a rule follower and wanted to do it right. Interesting - they did a "control group" of healthy kiddos, and one boy went 75 minutes drinking Ensure. YUCK! We think he was there for the competition.
Layla then got a neurostimulator placed on Thursday. Because she is in a study group, there was a 50/50 chance it would be inactive or active. Half of the kids get placebos, while the other half get active treatment. Of course we were big time rooting for active treatment! The night before while in bed, she told me, "I can't wait to get a device tomorrow and start feeling good again." And, after the satiety test, she said, "I really hope the stim is real now." Unfortunately, we are 99% sure the stimulator is placebo. Unlike most of the other kids, she knows what it feels like. I knew right away as her ear didn't turn tomato red as it usually does. She has pinch tested it and is sure it's not working. Such a bummer! Layla was VERY quiet about it until today. The risk of doing a study is that it has potential to feel like a "waste of time" if it's not active. However, we knew going into it, there was a 50% chance this could happen. Layla felt bad and didn't want to admit it or talk about it. She is SUCH a trooper, but sometimes it's just so much to carry. She looked so disappointed, but didn't want us to feel that way. On the way to the hospital Tuesday morning while crossing the bridge, she grabbed my hand and said, "Thanks for letting me do this, Mom." It's so worth it - even if it is the placebo - for a chance at giving her better days! We also know that we are privileged to be a part of a group of people who are pioneering the way for better treatment options! And, someday, this may be readily available for littler sister, Ruby. Just because it's likely placebo, all is not lost. Though it does stink.
The study is for nausea patients. Nausea of any kind. It's not just dysautonomia or gastroperesis kids. It's fascinating stuff! It's not in the clinic anymore, and there is a lot more questionaries, as well as a a daily diary. Dr. K placed her first device, but nurses will place the ones going further. We don't know them yet, and it's likely someone different every week. I have child life lined up, as we don't experience much anxiety with hospital visits, but I'm not about to start. I can tell she's not too keen on new people who don't seem to know much about putting five needles into her head. Child life is amazing, such a perk of being at a children's hospital, and a service we look forward to utilizing!
The week at the house was so fun and life giving! She just loves it there. All of our favorite people were there. They come from Kansas City, South Carolina, Wisconsin, Texas, and Oklahoma. It's like a big family reunion! It's not sad and we don't sit around, yet there is a common bond I just can't explain. One of our friends (her name is Alisa - how crazy is that!), had her son's senior night moved up. They are from Kansas City and fly with something called Angel Flight. These are volunteers who use their time and airplanes to fly them for free. She was trying to get home a day early, lining up flights, looking to rent a car, and just feeling frazzled. Someone at the house said, "If I drive you to Des Moines, would you husband come get you there?" And that's what they did! Because that's what these people do. So cool!! Layla had art therapy, pet therapy, and gardening. Her sweet friend Grace was there and they are absolutely inseparable. We are thankful for all the good that has come from this; friends and community being at the top of the list!
We will go weekly for four weeks of placebo (we think) and then four weeks of active treatment. Then we have to redo all the stinky tests we did this past week. At that point, we will decide if we do four more weeks of active treatment back in the clinic so that she actually gets eight weeks. We will cross that bridge when it comes.
Dr. K was thrilled to see Layla and is just so proud of her! Layla is studying how music affects the vagus nerve for her Science fair research project, and Dr. K just went nuts over it. She was taking photos and sending it to others, even an author of a book who wrote about this! That was such a neat thing for Layla and such an encouragement. Dr. K asked Layla, "Where do you go to school? Harvard?" It was fun to connect with her on that!
Overall, we are much better than we were last year at this time! Not a single day passes where Layla and Ruby both don't struggle. We make decisions on the daily about this stuff. However, we don't feel nearly as weary. Layla has gained 30 pounds since last year (amazing!!) and is looking so good. Both girls are doing the nutrition protocol and it makes all the difference in the world for them. We actually head to Des Moines Monday morning again. It's all a lot to manage. But it is not lost on us the great joy and honor it is to care for them. We get to have these girls, and so even when we have disappointments like a few times this week, we let ourselves be bummed, and then onward. Jesus goes before us, and that is the only promise and confidence we need. All of YOUR support is sure a sweet bonus though. So, THANK YOU!
Layla and I spent this past week in Milwaukee. Tuesday was a gastric emptying test. After fasting, she had to eat eggs, saltine crackers, and 4 oz. of water. She said the eggs were terrible. They are actually smoked, and come pre packaged in a bag, cooked in a microwave. Seriously gross. Every 15 minutes her breath was measured by breathing through a straw into a test tube. We did this for four hours. She felt sick and tired. Though she tolerated it well, it wasn't fun. We also had to do a whole slew of questions and a couple heart monitor tests. If she was able to complete this test without throwing up or quitting, she would be able to enroll in a study with the neurostimulators again. Yay!!
The other test she had this week is called satiety test. She, again, had to fast, and then drank 30 ml of Ensure every minute until she could not anymore. She went 11 minutes. She almost quit after a few minutes, but they want you to push through the nausea until you are stuffed full. She thought she was going to burst and said after, "I went way too far." She's such a rule follower and wanted to do it right. Interesting - they did a "control group" of healthy kiddos, and one boy went 75 minutes drinking Ensure. YUCK! We think he was there for the competition.
Layla then got a neurostimulator placed on Thursday. Because she is in a study group, there was a 50/50 chance it would be inactive or active. Half of the kids get placebos, while the other half get active treatment. Of course we were big time rooting for active treatment! The night before while in bed, she told me, "I can't wait to get a device tomorrow and start feeling good again." And, after the satiety test, she said, "I really hope the stim is real now." Unfortunately, we are 99% sure the stimulator is placebo. Unlike most of the other kids, she knows what it feels like. I knew right away as her ear didn't turn tomato red as it usually does. She has pinch tested it and is sure it's not working. Such a bummer! Layla was VERY quiet about it until today. The risk of doing a study is that it has potential to feel like a "waste of time" if it's not active. However, we knew going into it, there was a 50% chance this could happen. Layla felt bad and didn't want to admit it or talk about it. She is SUCH a trooper, but sometimes it's just so much to carry. She looked so disappointed, but didn't want us to feel that way. On the way to the hospital Tuesday morning while crossing the bridge, she grabbed my hand and said, "Thanks for letting me do this, Mom." It's so worth it - even if it is the placebo - for a chance at giving her better days! We also know that we are privileged to be a part of a group of people who are pioneering the way for better treatment options! And, someday, this may be readily available for littler sister, Ruby. Just because it's likely placebo, all is not lost. Though it does stink.
The study is for nausea patients. Nausea of any kind. It's not just dysautonomia or gastroperesis kids. It's fascinating stuff! It's not in the clinic anymore, and there is a lot more questionaries, as well as a a daily diary. Dr. K placed her first device, but nurses will place the ones going further. We don't know them yet, and it's likely someone different every week. I have child life lined up, as we don't experience much anxiety with hospital visits, but I'm not about to start. I can tell she's not too keen on new people who don't seem to know much about putting five needles into her head. Child life is amazing, such a perk of being at a children's hospital, and a service we look forward to utilizing!
The week at the house was so fun and life giving! She just loves it there. All of our favorite people were there. They come from Kansas City, South Carolina, Wisconsin, Texas, and Oklahoma. It's like a big family reunion! It's not sad and we don't sit around, yet there is a common bond I just can't explain. One of our friends (her name is Alisa - how crazy is that!), had her son's senior night moved up. They are from Kansas City and fly with something called Angel Flight. These are volunteers who use their time and airplanes to fly them for free. She was trying to get home a day early, lining up flights, looking to rent a car, and just feeling frazzled. Someone at the house said, "If I drive you to Des Moines, would you husband come get you there?" And that's what they did! Because that's what these people do. So cool!! Layla had art therapy, pet therapy, and gardening. Her sweet friend Grace was there and they are absolutely inseparable. We are thankful for all the good that has come from this; friends and community being at the top of the list!
We will go weekly for four weeks of placebo (we think) and then four weeks of active treatment. Then we have to redo all the stinky tests we did this past week. At that point, we will decide if we do four more weeks of active treatment back in the clinic so that she actually gets eight weeks. We will cross that bridge when it comes.
Dr. K was thrilled to see Layla and is just so proud of her! Layla is studying how music affects the vagus nerve for her Science fair research project, and Dr. K just went nuts over it. She was taking photos and sending it to others, even an author of a book who wrote about this! That was such a neat thing for Layla and such an encouragement. Dr. K asked Layla, "Where do you go to school? Harvard?" It was fun to connect with her on that!
Overall, we are much better than we were last year at this time! Not a single day passes where Layla and Ruby both don't struggle. We make decisions on the daily about this stuff. However, we don't feel nearly as weary. Layla has gained 30 pounds since last year (amazing!!) and is looking so good. Both girls are doing the nutrition protocol and it makes all the difference in the world for them. We actually head to Des Moines Monday morning again. It's all a lot to manage. But it is not lost on us the great joy and honor it is to care for them. We get to have these girls, and so even when we have disappointments like a few times this week, we let ourselves be bummed, and then onward. Jesus goes before us, and that is the only promise and confidence we need. All of YOUR support is sure a sweet bonus though. So, THANK YOU!
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