Yesterday, Savannah and Xander had an appointment with their dietitian. This one we saw about 5 months ago. She has started a clinic and is working with children like Savannah and Xander. She told me she had even seen a child that morning with BBS who is 22 months old. She works with a lot of children with a syndrome called Prader-Willi syndrome. They have an obesity symptom that is similar to BBS's. They are always hungry and don't know when to stop eating just like with BBS. Some have died because of their obesity and problems from it. This is one of the hardest symptoms of BBS. We deal with it daily. We have had to put locks after locks on the fridge, a new one every time the kids figure out how to break or open it. We have had to put child prof locks on cabinets and move food up high where the kids can't reach or see it. We can't have food out on the counters. It is hard to be around other people, such as family events, holidays, a simple picnic or snacks at the park. At family things we have to make sure all plates from everyone else get thrown away or else Savannah and Xander would just go from plate to plate. Where other kids are focusing on playing and running around, they are only seeing the food. Savannah and Xander food all the time, even after just eating. They have meltdowns and tantrums over it. It is exhausting and I feel for them. My heat breaks for them every time I have to say no and the tears are streaming down their poor little faces. I feel like I'm such an inconvenience to everyone that they have to accommodate snacks and food just for us.
Sorry, I could just go on and on :( Anyway, there is a clinic here in Utah for Prader-Willi Syndrome and they have this neat website,
www.pwsausa.org. It has some interesting stuff there about health for these special children. The families have a support group and they get together and do fun family things together like a pool party during the summer and they have celery and carrot sticks for snacks! They all understand each other. And, you can share stories with them like when my daughter tried to eat raw meat, raw eggs, or did eat backing soda, or when that Xander tries to get into the cabinets to eat flower, the fridge to eat butter and the time when we were at one of our friends house and we caught him eating their dog food. Oh, wait! that happened at another friends house too. But, they all understand and they can relate and laugh with you. They know how hard it is and they know how you work every hour of every day trying to keep your children healthy and they know the pain of knowing that this is going to be a life long struggle for our children and how much we hurt for them.
The dietitian is going to try to get us connected with this group of parents! I am so excited and can't wait to hear all of the knowledge and insight that they will have for me!
They weighed Savannah and Xander and Savannah has stayed the same weight and grown an inch since our last visit! But, Xander had gained over 2 pounds and only grew a centimeter :( I was amazed. Poor guy. I don't know what I have done wrong! I was so surprised because of how picky he has been lately and I was just not expecting that at all. The dietitian said we have to give them grains and beans, so that they are getting the right amount of nutrients and vitamins and also take a calcium supplement. Those things will help their eyes, not stop the deterioration but maybe help them to stay healthier longer, she had me there when she said that. We have to not give the kids as much nuts as they are eating. Only about a tablespoon, which is going to be hard for them and us, because it is our go to fast snack and it's become their favorite. But, it has too many calories. The kids can only have fruits or vegetables for snacks, at home, church, school, anywhere. They can only eat in the kitchen, Xander can't wander out, and no eating in the car, only in the kitchen. We might have to make it so that at school all the kids can only have fruits or vegetables at snack time. Sometimes she has to write up a paper for the school so they have to. When she gets older she might have to have an aid with her to make sure she doesn't eat anything she's not supposed to and be with her at lunch to make sure she only eats her lunch. It's all becoming much more complicated, and we are going to have to be a lot more strict but, she is willing to work through it with us and I feel like we are on the right path. She is going to stay in touch and help us figure out the best plan for our family and to help Savannah and Xander. We will go back in 3 months.I feel like she really cares! I don't know if it's okay to hug your children's doctor and trying to hold back tears at the same time but I just couldn't help it. Then I almost had a complete meltdown right there, but I fought it back. Yea me!! We made it out without me completely embarrassing myself. I just felt like she truly understood and wants to help us. I am just so grateful for doctors like her. It feels like the burden is slightly lighter when you have people like her.
I'm still not sure what to do about Halloween. I want the kids to go because Savannah is so excited for it and can't wait to wear her PINK, SPARKLY mermaid costume, and I want them to have fun and have those memories but I just wish everyone gave out little toys, healthy snacks like mini bags of carrot sticks, or something. It would just be a whole lot easier! What ever happened to stickers and pencils? LOL :) I think we will probably get some little party toys from party land or somewhere for them to trade their candy for when they get back, you know the ones like bouncy balls, Chinese figure handcuffs, little rings and stuff. Savannah will go for anything princess and Xander just loves dinosaurs, which is what he is going as! He plays the part very well! He is my little adorable monster!
