Saturday, October 30, 2010

Usborne Book Show!



If you haven't heard of Usborn Books, they are awesome! They are geared toward children of all ages and most of them are interactive! Not to mention they are so freaking cute! There is an That's not my... series , which is touchy-feely,that i love that is great for even Xander's age! There is a lot of touchy-feely, flip flap, puzzles,sticker books and stuff that I love for church or waiting at a doctors office!I've been wanting so badly to have a show so I can get books for Xander, because before he came along, I just had to get everything that is pink, princess, fairies... you get the picture. So I need to start making my collection of boy books! I love books, especially these ones! I don't think I've ever have bought any other kids books besides Usborne. My sister-in-law is a Supervisor for Usborne and is going to do a show for me! Whenever she gets new books or catalogs I love to look at them and make a long wish list! I know I'm a geek! It's perfect timing for Christmas. We always get Savannah books for Christmas. I think they are perfect gifts! A lot of their books are great for children with learning delays, autism, and down syndrome! I think they have really helped Savannah a lot! I would love for anyone who can make it, to come to my show! It will be fun, and I'm going to make some yummy food! It's Saturday the 6th at 10:00AM, at my house! If you can't make it or want to look at the books online you can go to her website to browse. I also have a catalog if anyone wants to pre order! I can't wait to see everyone there! Let me know if you can make it!
www.erinsbooks.com

Wednesday, October 27, 2010

Wednesday's Adventures

Yesterday, I had forgotten about Xander's doctors appointment with the pediatric surgeon, for his anal stoniness, that was today, until around six last night and it was at 11am this morning, so I wouldn't be home in time to get Savannah from the bus. I started freaking out. I thought about just not having her go to school, but it was her Halloween day, where she got to wear her Bell costume to school and do Halloween activities. I didn't want her to miss it. I would feel so bad. Savannah loves any chance she gets to wear her princess dresses! I really didn't want to have someone have to watch her for me. I hate how often I have to ask my friends and family tend her for me. I feel so bad. For about an hour I kept trying to figure out something. I really don't want to be a pain or a burden. I just have way too many appointments that she either can't go to, or it would just be too hard to have her there. Maybe one day I can pay my friends and family back for all that they have done for me.They have their own busy lives and their own children, and yet they take their time out of their day to help me. They are always there for me when I need their help. It means so much to me. I am so blessed.

I finally got the courage ask someone to watch her for me. I text-ed one of my friends and she text me back, "I would love to!" Thank you Stophiann! It meant so much to me, more than you know!

At the pediatric surgeons, he used a size 14 stretcher on Xander. Xander tore again and bled. I tried not to look as I held his pacifier in his mouth with one hand and I held his hand in the other, as he screamed. It is so hard to watch him go through pain, and he has too much of it for a little six month old baby. The doctor is having us move up from a size 10 to a size 12 stretcher once a day until our next appointment with him in December.

When we had gotten home I noticed around Savannah's eye was all red and swollen, as if she had been punched in the eye. I quickly opened her backpack to see what her teacher had said, and sure enough there where two little yellow posit notes on her yellow daily report paper from her teacher. They read(shortened version) "Savannah was upset and fell out of her chair on her face. She was such a trooper. I feel so bad! She cried for only 2 min. or so and then was fine." Her teacher is so nice! It was so nice of her to put it in a kind way,"Savannah was upset." when I'm pretty sure she was mad and started kicking and throwing a tantrum and then fell off her chair. I feel bad for her teacher! LOL. When I told Court about Savannah's eye, he said, "well, she probably deserved it." Luckily, I think Savannah has already forgotten about her poor eye. Hopefully I can convince her to let me get her Bell dress off of her sometime today so I can wash if for Saturday! We'll see how that goes. I'm still trying to figure out how I'm going to fix her hair to look like Bells. Any suggestions? I think I'm going to dress up like a pirate, by just throwing some stuff together.

Saturday, October 23, 2010

Autism Every Day -

I was at the doctors the other day because my hair has been falling out like crazy for three months straight without slowing down at all. It's beginning to freak me out. It only lasted for around a month with Savannah. He had me get my thyroids tested. I'm still waiting for the results.I had Xander and Savannah with me. He asked about how Savannah and Xander are doing and I told him Xander still seams to be sick. He still wakes up two to three times a night because he can't breath. He checked Xander's ears for me and they're not infected anymore! We might be Scheduling Xander's first surgery soon, for his Polydactyly . I gave him Savannah's results for Autism for him to copy. Right now we can't really afford to go to any classes or take her to anything to get her extra help, but at least I'm able to go to a support group once a month at Kids on The Move, and I have lots of friends for support. He suggested that I go online and fine out as much as I can about autism, and as I watched video after video the tears came again and again. It amazed me how much the same these mothers are feeling and going through the same feelings and the same fears, that I am not just about autism but mostly about bardet biedl syndrome. It has changed my families lives forever. The day Savannah was born, she changed mine and Courts life permanently. She changed who we were. Something wasn't right with our precious little girl. As we watched her grow and she missed milestone after milestone, and kept gaining weight we worried more and more. She didn't act or interact like the other babies and toddlers. Sometimes I feel like no one understands, and no one can really know how each moment of every day breaks my heart, watching my children. I feel like the dream has died, my dreams as their mother watching them grow up and wondering if they will have all of the same opportunities that normal children have, make lots of friends, fall in love, graduate, get married,even if they will ever even be able to have children. I know for sure that Xander most likely won't. Only two males with BBS have ever had children. BBS effects just about every thing we do. Going anywhere with Savannah is a huge deal. I have to be ready, knowing that she will probably run out into the street, not listen to me, throw herself onto the floor throwing a tantrum, while other parents look at her and me like I'm a horrible mother. BBS effects our possibility of having more children. There is a 25% chance with each pregnancy, and we've managed to have two with BBS. I want so badly to have one more child, but what If they have it too, and what if it's even more surveyor. Can we go through it all again? All the pain, all the sleepless nights, everything we are still going to have to watch each of our children go through. I know that sometimes when I watch other children playing, sometimes I wish that my children were normal, and healthy. We could go places where Savannah could play with other kids and not just play by herself or overreact to things. She'd be potty trained. We wouldn't have to go to all of these doctors appointments, just to make sure they are ok. I wouldn't have to worry about every little thing she eats, and when she has a cookie or something she likes I wouldn't have to be worrying about how much she might gain, or if she's going to get diabetes. I wouldn't worry so much when they are not with me. They could be just like all of the other children. Savannah can't control her weight. She can't eat just like every other kid. She's going to have to deal with her weight her whole life, and I'm really scared about her being picked on or left out by other children or having bad self esteem, because I've struggled with it my whole life. I don't want my daughter to feel bad about herself. She is so beautiful! I love my children more than anything, and even if it takes longer to reach the steps that come so easily to other children, and even if they have their little quirks. In a way I think it makes me love them more.

Kids stuff!

A few weeks ago was Crazy Socks Day at Savannah's school!
Crazy Hair Day!

Xander got his first teeth at five months!

Xander loves to sit in his chair!
Xander can feed himself! He loves to eat!

Reversible nursing cover

To make this I used the turtial at www.Makeitandloveit.blogspot.com

Boy Diaper Cake

www.plan-the-perfect-baby-shower.com/diaper-cake.html

Presonal Prgress "P" Party!

Wednesday night for our Beehives activity we had a personal progress party! It was so much fun!
We all brought snacks that started with the letter "P"! One of the girls made the yummiest pizza bites ever filled with cheese! I couldn't stop eating them!






The girls being silly!
We wore things that started with the letter"P"! These are the girls pink and purple socks and slippers! Aren't they cute!
Pink and purple nail polish!
I decided to experiment and make Orange, Strawberry, banana crystal light with sliced strawberries in it. It was awesome!

I made Pink and purple pom poms! It took a couple tries to get them right, but once I figured it out they were pretty easy to make.

A lot of us had pig tails and pajamas on! We watched A Little Princess(one of my favorite movies) I really love the message it gives. One of my favorite quotes from the movie is "I am a princess. All girls are. Even if they live in tiny old attics. Even if they dress in rags, even if they aren't pretty, or smart, or young. They're still princesses. All of us." We also went over with each girl how they're doing with their personal progress and made goals.
I found these really pretty pink pearl sprinkles! I really love them!
I made peanut butter rice crispy treats. They are so good!
We had POP Chips and Reeses Pieces and lots more yummy snacks!

New Hobby Lobby !

A Hobby Lobby just opened in Orem, where the Circuit City used to be. I went there the other day. It is my new favorite store! It is so big! It has two floors. Hobby lobby is a combination between Jo-Ann's Crafts and Tie Pan Trading. I could of spent hours there! They're baking ail is incredibble! I got so many ideas for crafts and hair things for Savannah! It was so hard to not buy anything! I really want to go back, but I'm going to have to leave my wallet at home! You have to go there if you haven't!

Monday, October 18, 2010

Xander's Ear Infection

This morning I took Xander to the doctor because he has been so congested and has started getting a cough. And guess what, our little boy "who is never sick" has an ear infection. So, I'm over here thinking awesome, this is going to be just like Savannah's first winter where she had eight ear infections in three months,and finally had to get tubes. And then I start freaking out because I'm afraid that since he has an ear infection it might make his immune system is weaker and he will have even higher chances of getting a battler infection, that will damage his kidneys and so on... Flu seasons is starting and all of the other sickness and Xander has a greater chance of getting RSV and everything because he had phenomena when he was born. We are not going to bring Xander to church anymore for now. we'll probably just take turns going to sacrament and Court will stay home with him for the rest, because he doesn't have a calling for right now. I feel bad for being an over protective mother but with Xander we can't take any chances. If he gets sick he could die from it, so we have to be extra careful with him and we have to be over protective. When Savannah comes home from school or outside or church we'll put hand sanitizer on, and if she has a runny nose or anything we'll keep her home from church and school. It will be hard, but if there is any chance of it keeping Xander from getting sick or saving his life it's more than worth it.

Sunday, October 17, 2010

The Things That Matter Most

Whenever Savannah walks by a flower, she has to stop and smell it. She gets so excited and says to me "Flower Flower!" Then she tells me the color of the flower with as just as much enthusiasm. Every time she sees a butterfly she gets so excited and tells me. Every rock, every star. She notices all of the little things that we, much of the time will just walk by without even thinking about. Savannah see's the true beauty in everything and everyone. She would never not play with another child because they looked or acted different. She is her own unique kind of person. She loves everyone and when she smiles or laughs you just can't help but smile back at her. I was reading a talk given by President Uchtdorf, from conference about The Things That Matter Most.

"This is a simple but critical lesson to learn. It may seem logical when put in terms of trees or turbulence, but it’s surprising how easy it is to ignore this lesson when it comes to applying these principles in our own daily lives. When stress levels rise, when distress appears, when tragedy strikes, too often we attempt to keep up the same frantic pace or even accelerate, thinking somehow that the more rushed our pace, the better off we will be.

One of the characteristics of modern life seems to be that we are moving at an ever-increasing rate, regardless of turbulence or obstacles.

Let’s be honest; it’s rather easy to be busy. We all can think up a list of tasks that will overwhelm our schedules. Some might even think that their self-worth depends on the length of their to-do list. They flood the open spaces in their time with lists of meetings and minutia—even during times of stress and fatigue. Because they unnecessarily complicate their lives, they often feel increased frustration, diminished joy, and too little sense of meaning in their lives.

It is said that any virtue when taken to an extreme can become a vice. Overscheduling our days would certainly qualify for this. There comes a point where milestones can become millstones and ambitions, albatrosses around our necks."-President Uchtdorf

I realized that I've been overwhelming myself and keeping myself busy doing projects, going places, going to appointment after appointment. I've been trying to keep myself busy so I don't have to think about it, because when I read or hear about a sick child or a child with a disability, watch a movie and someone is going blind, a child dying, a family suffering from a loss I just can't stop my emotions and It overwhelms me and I just can't stop crying. I've even had to leave class one lesson after sacrament. When I stop I just can't help, but dwell on my fears of losing Xander.When I left the Hospital the last time as soon as I had gotten into my car to leave I started crying, thinking that this place, this scary place where, I have to feel the fear of losing my children every time they have a surgery,feeling the helplessness that it is out of my hands, this could be the last place that I see my Xander. I go in for test, and watching Savannah or Xander screaming out of pain or fear, not being able to help them, because this is the only way of getting answers, most of the time by myself, not knowing what they are going to be telling me. It might be where I have the last movement where I look into his big brown eyes, so full of life and then watch them dim and fade. I suddenly felt hatred for that place. Not for the doctors or nurses, but for that place full of fear and pain. I know that everything might be just fine and he'll have his surgeries and recover, but the reality of him being just so close of him leaving us scares me so much. Savannah is just starting to notice him. She gives him hugs and kisses. We've watched him fight for his little life and we've watched him grow strong and he's just starting to show his personality. How would I able to watch as other mothers play with their little ones and watch them crawl, walk, and talk if I lose him before I get to see him do all of those things. How would I be able to go on with a part of me gone? I know that I shouldn't be thinking of these things, but I am just so afraid of not knowing. I feel like I have to prepare myself for everything, but I just don't know when? where? will he? why? How? I just know that I am just so grateful for the gospel and for my family. They are the most important things in my life.
I need to try and let the fear go and stop and smell the flowers. I need to embrace every minute with my husband and my children. I need to take pictures and remember the good moments, the ones that really matter.

Adjusted Fourth of July Outfit

I got this plain white shirt and plaid skirt on sale at Old Navy. Savannah got a black marker stain on the shirt the first time she wore it on her first day of school. I knew she would come home with some kind of stain on it. I couldn't get it out. Then I came up with this idea with the flowers. I really love the way it turned out, and you would never know there was a stain. If she gets another one I can just make some more flowers to put on it!

Friday, October 15, 2010

My Cute Dress-ups!

I love to get Savannah's dress ups from www.mycutedressups.com. They have the cutest princess dress-ups and they also have them in adult sizes. Right now they're doing a drawling for an adult Bell costume! Check it out!
http://princessdressupcostumes.wordpress.com/2010/10/14/errant-email-and-free-dress-friday-week-12/

Tuesday, October 12, 2010

Crazy Week!

When we had gotten home from our trip I had a letter waiting for me from GIANT Steps. It was Savannah's diagnoses. She had scored a 13 and is diagnosed with Autistic Disorder with obsessive compulsive features. I know that it isn't true autism because it's part of her syndrome. I wasn't surprised at all. I think it's kinda funny though because anyone who knows Savannah the obsessive compulsiveness is one of Savannah's cute little quirks. I've been trying to get a hold of the lady who did the test, to have a consolation with her, but we keep missing each other. Now, I hope that I can just find some help on how to help Savannah and how to deal with her tantrums and everything. She's been doing better since she's started school! I went to parent teacher conference and her teacher said that she always has to have the same yellow chair and sit on the same yellow circle. Savannah's favorite color is yellow. I love Savannah's teacher. She is so nice! Last week we had appointments each day. Xander had appointments with the Cardiologist. His heart sounds the same. We went to the Pediatric Surgeon and we have to keep doing the same thing for his anal stanossis but with a bigger stretcher, and then go back in a couple weeks, and he'll look at it and see if it's in the right place, and then probably do the biopsy for hurshprungs then. Savannah had a weigh in check up, and she has lost half a pound! I have no idea how. I was so afraid that she would gain weight. We have to bring her in once a month when ever I want to bring her in. She also saw the ear, nose, and throat doctor for her tubes and they look fine. I also had a dentist appointment. This week I'm looking forward to no appointments! I'm glad because I have a lot of fun stuff to plan and do for young women s!

Wednesday, October 6, 2010

Missouri Trip Photo Album

These are called Elephant Ears. I saw them all over the place. Sorry these pictures are out of order and the time line goes backward kinda. Oh, and before you start looking at this post, it is very long. Be warned! I think I got only one or two pictures the whole trip of Savannah looking at the camera. She is so stubborn!
Savannah walking into the temple grounds. It is so beautiful and peaceful.
There were so many butterfly's!
This is the "number one buffet in Kewitt," also the only restraint that we found to eat at. It was very different. We spent the night up by Nauvoo. When we got to the hotel I got Xander out of his car seat. He was soaked up his back, and it wasn't spit up. YUCK! It was so gorse! I gave him a bath and took off the car seat to get it cleaned in the washer downstairs. It was like water. The next morning we tried forever to figure out how to put the car seat back together. Just when we were about to give up Kim and I took it over to WalMart to see if we could just look at theirs and figure it out. A lady who worked there saved the day and put it together for us. She must of thought we were crazy. What were we suppose to do? Not put him in his car seat?
The Nauvoo Temple

My favorite store in Nauvoo. The bakery!

Savannah and grandma Jensen
We went on a wagon ride in Nauvoo. At one point Savannah tried to climb out. Later she had a small tantrum and threw her headband out of the wagon and we had to drive back later to find it.
I wanted to get Savannah, Xander and me in this picture with the Daughter, mother and baby, because I remember when I was a girl, for a ward thing or something the release society posed as the statures. My mom, my brother Caleb and I posed as this one. Well, with Savannah it didn't go so well. What was I thinking...
She's in the picture!
Me, trying to catch her...
Savannah decided she was going to sit down and find little tiny rocks and ignore us.



I got to spend some time with my friend Meagan. We've been friends since Kindergarten. She took me out to dinner one night at this really yummy Japanese place. I got to see her cute new house! One afternoon we went to do fittings for bridesmaid dresses for her wedding next fall. It was really fun to see her sister and Darcie, who I haven't seen in forever. Luckily, I have until January to find a dress with sleeves, or make them. The morning before we left Missouri She and her fiancee had me and the kids over for breakfast. She made yummy fruit parfait, cobbler type things! They were so good!
My mom got Savannah princess shoes. Savannah loves them!
Poor Savannah, If only Cinderella had wide feet. Whenever she walks in the shoes I hurt for her, but, she wants so badly to wear them. "Beauty is pain."
Princess Savannah
Car Pictures!
Car Pictures!
Savannah and her cousin Katie have so much fun together! Savannah won't let adults hold her hand but she will for other kids. Too bad Katie couldn't have gone everywhere with us.
Savannah would of loved to of just played with Katie the whole trip!
We went to a Pumpkin patch on Friday with my sister-in-law Kristy and her kids! They had so much fun!



We went on a hay ride!

This is at Liberty Jail.


This is Far West again.


This is Adam-ondi-aumen. It was very beautiful. Savannah loved plying with the rocks.
And on the rocks...
This is one of her meltdowns in the car. It was a fun trip and I'm glad that I got to seem my family and friends and all of the church sites. Over all Savannah and Xander did amazing. And we made it back off the plane. I almost felt like kissing the ground when I got off. No more planes for me for a while!