Monday, Savannah and Xander had their yearly visit with the Metabolic Genetics and their Nutritionist. First they had some blood test done, which they were fasting for. They had been crying and whining at me all morning for milk. I had to take turns with each of them in the chair holding them down while they screamed and tried to get away, while the nurse tried to take blood. They each got a sparkly bandage and their very own play dough for being so brave!
Then we went over to Genetics and they each had their turn with the usual, weight, height, checking head circumferences, and blood pressure stuff. The nurse checked Savannah's twice because it was so high, but it was still high. It was cute cause Savannah and Xander kept wanting a turn doing what the other was doing! No screaming! :)
Their doctor asked all of the usual questions and said that they look great except for Savannah's blood pressure, lipids, cholesterol and stuff were all very high and he wanted us to have it checked again before we left. We just need to keep the followups for Savannah's kidneys and for their eyes, for the RP.
Then, we talked to the nutritionist, and she wasn't too happy with their weight. She wants them to lose weight and lower their blood pressure, cholesterol and everything. We have to come up with an exercise plan with their pediatrician and see him every month to give them a check up with their weight and everything. I have to make a log for her of everything they eat over the next week and get it back to her so she can analyze it and help us start a plan. I know that she is just doing her job and she meant well but, I just felt crushed that I'm just never being or doing enough for Savannah and Xander. Am I really qualified enough to be their mother. I feel like I just keep failing them and trying and trying every day. I tried so hard to fight the tears back and not have a breakdown in the room in front of them. I felt like yes, it isn't only me who feels like I am not trying enough. But, it breaks my heart every day when Savannah has her meltdowns because she is hungry, but I can't give her what she wants. I offer her carrots, cucumbers, or celery but she just cries even harder.Xander just chooses not to eat rather than eat a vegetable. I feel so sad that when we are out with friends and they have crackers or other treats and I have to pole my kids away because that's all they want, but I just have to keep thinking to myself of what that would do over time to their poor little bodies. It hurts so much. I wish I could just give it to them. It would be so much easier but, I will be strong.
Mark'sdailyapple I have been reading it and using this cookbook that he wrote for the last few days now. He talks about how grains (and carbs in general) is that they raise your body’s insulin levels, which can lead to becoming insulin resistant, and type 2 diabetes, Which is also common for people with BBS. He talks about how living and eating this way will lower your lipids. It is all healthy, and the these are the natural foods that our ansesters ate.
It is so hard because no one fully understands why all of our precious children's bodies with BBS work the way they do. I want so badly to find a cure to help our children and to help them to have healthier bodies. Hopefully, one day we will have an answer. But, I do know that I will never give up on Savannah and Xander.
It feels good to have a plan again, and we are slowing going into this, more so with the kids. It is so amazing how our Heavenly father answers our prayers. When we feel so lost and when we feel like there is no where to turn, and no hope, he shows us a way. I am so grateful.
HERE is the recipe! They used crab instead of chicken, but I didn't have any so I used chicken.
pintrest! It was so good! I went a little crazy, just as I always do and I made an big Paleo board! This is Bacon Wrapped Caramelized asparagus. I substituted splenda brown sugar. Find the recipe Here!
So, here we go on a new adventure! Hopefully, a lifechanging one! It will be hard, but I want my family to become healthy, and I have faith that this is what we are suposed to be doing right now.
Wish us luck!!