Monday, October 29, 2012

The Mermaid And The Dinosaur!

First, I just want to say how overwhelmed with the compassion, love, kindness of our friends and neighbors. They put together a flyer for our neighborhood to put on their doors of those who are going to have (A Candy Safe Zone) healthy fruits or vegetables for Savannah and Xander on Halloween night!  I just am amazed and so grateful for all of you. Thank you so much!!!
 Saturday, I thought it would be fun for the kids to dress up in their Halloween costumes and do a fun photo shot and play at the park!  Savannah was so excited to wear her pink sparkly mermaid dress!!
My beauitful mermaid princess!

And Xander fit right into his cute little dinosaur costume! He had so much fun running around, stomping, and roaring like a dinosaur!

He is just too fast to get some poses. LOL

I just love this little dinosaur of mine!!

The kids had so much fun playing in their costumes! And, I had fun just running around and chasing and laughing with them!

Friday, October 26, 2012

Dietitian Appointment

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,  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!

Thursday, October 25, 2012

Daring Myself

I’m daring myself to dive deeper..push harder..know myself more truly. I want to adventure ..fearlessly. To devote myself fully to good habits and things that promote self care. I am daring to call myself to be the me who I am and not trying to be just like all of those amazing mothers who do everything perfectly.  I am going to be there in the moment with my children and just soak in all of the beauitful memories that we are adding to our story, and it feels so very true & settles deeply into my heart. I will be the best mother I know to be. I desire to walk in boldness and dwell in joy. To cry and pray, and, dance & sing when all i feel like doing is giving up. To live the full life. Arms open to receive. I’m daring to embrace the pain and the trials that are placed thoughtfully in my way. For that is how we grow and learn to become stronger and become closer to our Heavenly Father. To call my unique life, selfless partner, & my two angles beautiful. I’m daring myself to feel gloriously alive. Will you?

Thursday, October 11, 2012


Last weekend my mom and Brett came to Utah for a visit. Savannah was so excited!! Saturday, we went to a pumpkin patch. It was so much fun. The kids could have spent all day there!
 There was a fun little tractor ride.
 They had a giant corn box. Savannah loved swimming in it!
 And Xander had a blast jumping into the corn, again and again!

 Doesn't he just look adorable in his overalls on the little blue tractor! I love this picture!
 We went in the corn maze. Xander loved it because we let him run wild. All he could go was straight! We got lost in the maze and all of the sudden Savannah says, " my diapers falling!" Oh great! LOL! So I just tried to tighten her diaper on her and we tried to find a way out so I could take her to the car to change her. Then, we were all good to go!
 They had a Trick-or-treat hay ride. The kids were so excited!
 The sun was in our eyes. lol
 As we rode along, they had kids dressed up in costumes throwing out candy. Savannah was so excited to see Snow White! Savannah and Xander gave us the candy and I told them they could trade them in for a treat, (a raw honey stick) when we got home. And surprisingly they went along with it with no wining, and when we got home they had totally forgotten!

Sunday, we went to my grandmas, by St. Gorge. It was her birthday and we hadn't seen her in a while.This is Savannah's picture of me!
And her picture of Grandma. She loves to take pictures! She's so funny!

Xander asleep, holding his binky in his mouth with his dinosaur's tail. I just think this picture is awesome! So Xander!  I love that boy!
 Xander was out almost the whole way up there!

Our four generations picture! It was so fun to see everyone! I wish I could see my grandparents more often!
On our drive home we stopped by some sights.  Savannah was so sad when she realized Grandma Jensen and Papa were leaving. Savannah wanted to go home with them. Hopefully they can come back soon!  We are sure going to miss them! Love you guys!

Wednesday, October 10, 2012

Savannah's Ophthalmology Appointment

 Friday, Savannah had her eye appointment. I was in such a hurry and worried that we would be late that when we got there, the receptionist informed me that we were an hour early for Savannah's appointment. I couldn't believe it! I wrote down the right time on my calender but for some reason I had it in my head that we had to be there at 9am instead of 10am. So, We played with the toys and read lots of book while we waited, oh and chased Xander up and down the hall. The appointment went very well, if you don't count Xander running away out of the room and office 4 times, and his obsession with touching everything, opening every cupboard, and pushing every button in the room. LOL!
Savannah doesn't need new lenses! Her glasses that she has are still working great for her! And, we'll bring her back in 6 months for her next checkup. 

I also had Savannah's IEP and she is doing great! Everyone loves her and she is starting braille for 20 minutes, two days a week. The vision therapist says that she thinks Savannah can see good in a lighted classroom! But, we have been noticing more and more problems with her seeing a night. She has even started saying that she can't see in dim rooms, hallways, her room, and in the dark. She walks very slowly and carefully in the dark, she likes to hold our hands, and she trips over stuff in her way a lot. but, we are still hoping for the best and in the meantime, we are hopeful that learning braille now will really benefit her. We think she will pick it up quickly! She is so smart and enthusiastic!

Savannah just makes our life's brighter each and every day!! We love her!

Homemade Whole Wheat Rolls & Girls Night!

 Last week, a lady in our ward had a class to teach us how to make the best whole wheat rolls! She is also my amazing visiting teacher! She is so talented with baking! My mother-in-law made our batch together, since we didn't need many rolls since the kids can't have them.
I learned that I am not the best kneader and I'm not very good at cutting my rolls out very evenly :( But they taste amazing anyway!

This night was so much fun! Sorry! I forgot to get a pictures of the rolls after they were done! It was after 10PM when we got home but we baked them and had a couple to taste that night. They really were the best rolls I've ever had!  I can't wait to try to make some paleo bread! The kids will be so excited to have an almond butter sandwich!!!

Pork With Watermelon Salsa

  • 2 cups chopped watermelon
  • 1 cup chopped strawberries
  • 1 cup chopped kiwifruit
  • 1 cup chopped peaches
  • 3 tablespoons lime juice
  • 4 teaspoons raw honey
  • 1/2 teaspoon grated lime peel
  • 1 to 2 mint leaves, chopped
  • ripe peaches , 3 TLB. raw honey (set aside for sauce)
  • 3 pork tenderloins (3/4 pound each)

  • For salsa, in a small bowl, combine the fruit, lime juice, honey, lime peel and mint; set aside. In a blender, blend together the two ripe peaches with raw honey. Set aside.
  •   Grill pork chops, covered, over indirect medium-hot heat for 15 minutes. Turn; brush with some of the preserves. Grill 10-15 minutes longer or until juices run clear and a meat thermometer reads 160°, basting occasionally with preserves. Serve with salsa. 6 servings   
  • This is one of our favorite summer recipes! It is so fresh and yummy! The watermelon salsa is so good I love to make it as a fruit salad just on its own!