Packing for our Missouri Trip

We're leaving on Saturday to go to Missouri to visit my mom and brother and sister-in-law! If any of you didn't know I have five brothers. Court can't go because of school, work, and of course hunting, so It's going to be the kids, my amazing mother-in-law and me. I'm so excited, and nervous. It's sad to admit but ever since I've seen Final Destination, where the plane explodes just after take off, I've been terrified of flying, and now that both of my children are going to be on the plane with me I'm even scarred. Then, there is Savannah, well, we'll just have to wait and see how that one goes. At least I'll have Kim with me to help. I could never of gone by myself and the kids. Kim is bringing a portable DVD player, which will be saving my sanity by the way. I went to Win Co today and went crazy at the bulk bins for healthy snacks for Savannah. I love that store! They have no sugar yogurt covered raisins, nut mixes, dried fruit mixes, and every kind of dried fruit you can think of! I even got some chocolate covered pretzels and I got some chocolate covered brownie bites to try"not so good." Yes I'm a Hippocratic. I am a mean mom and don't let Savannah eat hardly any sugar, then there's me who cant get through the day without some kind of chocolate or candy, and you know how most people get sick after so much. I usually don't. Yes, My name is Nicole and I am a sugar-catholic. Anyway, back to our trip. I got lots of stuff for Savannah to do on the plane. I hope It works. Does anyone have any tips for me? I could really use them! We have a two hour lay over. I think I'm going to take my baby sling for Xander.Over the week we are going to see all of the sites! It'll be so much fun!..as long as the kids are good.
I've been packing on and off all day. I've ended up with three suitcases...filled with only Savannah and my stuff, oh and four things of baby formula and two days worth of diapers. I'm going to buy more diapers on Monday. I do know that I have an addiction. I love clothes! I love hair accessories! I love jewelery! Oh, and you can't forget my new obsession with scarfs! I love them for me and I love them for Savannah. I love to match, and have coordinating accessories, and I'm so lucky to have Savannah who, shares my addictions. POOR COURT! I'm really sorry court, but it's just who we are, and you love us for it! While packing I spent forever laying out all of mine and Savannah's clothes and turning them into outfits, and deciding which, hat, flower, headband, necklace, or scarf... should go with each one and I brought two extra outfits for each of us, swimsuits, a light coat, and a sweater. I think Court thinks I'm insane. I know I am but if you know me it's just me. I'm kinda crazy, and OCD. I guess when I had Savannah I wanted to do all of the girly things for her. I blame it on being an only girl. It's so much fun to play tea party or kitchen, or paint nails with her, and she loves to wear princess dresses and dance to music, with her dad's scary dance moves of course. Poor Savannah. Someday she will realize that. But for now it's just so cute. So if anyone see's her dance. Her farther taught her. I had nothing to do with it! It made me so happy when a couple months ago Savannah actually came up to me, patting her head saying "hat hat." She was telling me that she wanted to wear a hat! Savannah likes to sneak into my room and put on my jewelry and shoes and walk around the house. Sometimes when I'm doing my make up she will come up to me and say "try try." It's so cute! Wow it's already 1AM. I guess I'd better stop going on and on and try to maybe sleep.

A reminder to me of how precious life is

Today,I had an appointment with Xander's pediatrician, so he could explain everything to me better and answer my questions about Vesicoureteric reflux (VUR). I really love both of their pediatricians. They are so nice, and they truly care. Today was one of those days where I go in for the appointment in the medical mind set. I had made a list of questions. Today,changed the way I view life and how much I cherish my two sweet, precious spirits, who are my children. Today, I was told by Xander's doctor that if he gets a bladder infection witch the VUR 5 makes him prone to, can damage his kidneys and they will fail and he just kept trying to put it in a nice way which sounded so much worse to me than if he would of just said it. He said, "he'll leave here", and the second time he said it he said "he'll leave you". It seams just so unreal, so unreal that he is so frail in a way, so close to leaving me, and there's almost nothing that I can do but, give him his antibiotic each day to decrease the chances of infection. He is such a happy baby. He has just started really laughing. It's so cute and, he just got his first tooth on Saturday. He's so beautiful and perfect. We've had him for such a short time. We've fallen in love with him. We've watched him grow and become his own little person, and yet, I'm just so scared that he will slip away. All we can do is love him, and cherish every movement we have together, and pray that he will make it through this. I just can't even imagine a life without him.I'm so scared.Then right before his doctor left the room he said to me,"He is a cute boy, make sure you take lots of pictures." I keep feeling like there was more meaning to his words ,as if he meant to add "just in case." After that whole appointment, after all that we had talked about, those were the biggest things that stuck in my mind.When I got in my car I couldn't hold it all in any longer. I cried and cried and now I don't think I have anymore tears left. I just feel so empty.
I keep feeling like no one understands what I'm going through, and I just wish that I had someone who has been through it all to talk to. Someone who feels all the same pain and sadness.Everyone says that I'm strong and that they don't know how I do it, but that's just it. I'm not. I'm just trying my best one day at a time to be the best mom that I can be for my children and love them. I'm just doing what any mother would do for her children if they were in the same situation. I don't feel brave or strong or anything. Some days I just feel like I'm failing. Sometimes I just feel so alone, but today my sister-in-law called me and told me that there is one other person who has felt all of my pain, who knows all of my fears. He suffered and died for me. All that I have to do is share my burden with him. I know that it won't leave, but just maybe make it lighter. She reminded me that the atonement is not only there for repentance. He has felt all of our pain and has made it so that we can turn to him and ask for his help, and he will give us strength in our time of weakness, just as in the poem of the footsteps in the sand. When looking back on our lives, during our greatest trials Heavenly Father is carrying us through, and he never leaves us.

40 Simple ways to show your child love

I found this and I thought that these are some really great ideas! Sometimes I just want to show Savannah how much I love her but don't know how, or when she's having a really hard day and I'm not sure if she understands that I love her and Xander so much. I just thought that I would share this list with you. I hope it will inspire some ways to show your children how much you love them too!

40 simple ways to show your child love:

1. Take them to a movie they want to see.
2. Go on a treasure hunt (collect all the loose change around the house/car) together and then make a trip to the arcade with your findings.
3. Take a long nature walk together, at their pace. Let them lead the conversation.
4. Find qualities about them that you genuinely love, and compliment them in front of others.
5. Frame a photo of the two of you, and display it in their room.
6. Put a few Hershey’s Hugs in one of their coat pockets, and Kisses in the other.
7. Play a game with them.
8. Let them win.
9. Make bath time special. Add lots of bubbles, colored soaps, maybe you could purchase a new tub toy or let them play with things found around the house. I let my kids play with things like colanders and funnels from the kitchen—they love it. Don’t forget to warm the towel!
10. Send them a handmade card in the mail with a coupon to go get ice cream with you.
11. Gather all the home movies that feature them as the “star” and have a movie night complete with popcorn and treats.
12. Using blankets and chairs, or a card table, build a clubhouse together and have a picnic inside.
13. Read “I love you” books together.
14. Let them stay up past their bedtime with you and watch cartoon classics together.
15. Do a chore that is normally reserved for them.
16. Tuck an encouraging note inside their lunchbox.
17. Give them your full attention.
18. Tell them some of the ways they make you happy.
19. Make them laugh.
20. Laugh with them.
21. Make their favorite treat to welcome them home from school with.
22. Show them your joy when they arrive.
23. Ask for hugs and kisses.
24. Listen, and let them make their own decisions whenever possible.
25. Make them a coupon book filled with things they’d enjoy doing, or things they’d like to get out of doing.
26. Take a day off from everything: work, household duties, technology, etc. and focus entirely on them.
27. Cook together.
28. Write them a poem using the initials of their name.
29. Decorate their room for no reason.
30. Create a sign that lavishes them with praise.
31. Kidnap them from school and take them out for lunch.
32. Make home a fun place to be.
33. Make a treasure box from an old shoe box, fill it with “gold” (chocolate coins) and make an official looking treasure map with clues for them to locate the hidden treasure with.
34. Go to the store and let them pick out all the ingredients to make banana splits. Make and eat them together.
35. Wrap up in a warm blanket together and take turns making up stories to tell each other.
36. Make a list of things you love about them and put it on their pillow before bedtime.
37. Talk about what they did in their day at dinnertime.
38. Sit down together and write a list of fun activities to do in a day. Write each idea on small slips of paper, roll up the papers and stick them inside balloons. Blow up all the balloons and then pop one balloon at a time until you’ve completed all the activities.
39. Play back rub/tickle games—ie; Spider crawling up you back…
40. Make a CD with all their favorite tunes and have a dance party.

What are some ways you show your love?

These are a few of my favorite things...

Xander loves to eat and sleep. He also loves to watch us make silly faces and embarrass ourselves trying to get a smile of a laugh out of him. It's always worth it!Some of his favorite things are his pacifier, his puppy, which also sometimes is used to help keep the pacifier in, and his bottle, or anything that he can put into his mouth.








Lately he loves to make spit bubbles, and make sounds with them. Sometimes Savannah thinks that they are bubbles and so she laughs at him and tries to pop them with her figure, and laughs again. It's so funny.

Daddy likes to take naps too. Aren't they cute!

Xander's GI Appointments

This is what the overall results from yesterdays appointments were. His Small bowel, barium X Rays showed no hiatal hernia or blockage. It did show his Gastroesophageal reflex. The results from the barium kinda freaked me out this morning when Xander had a bowel movement ( which was very painful for him and took about fifteen minutes for him to do,) was chalk white, with blood. That's happened twice so far today. I was so sure that they were going to find something wrong. I spent hours dreading it the day before, and was trying so hard not to break down while they were doing the X rays. We would go in and do some, and then wait twenty minutes, and do it again and again. It took one hour and forty minutes for the barium to go through his intestines. In the waiting room, watching children being wheeled on beds and cribs from surgery. I kept remembering how horrible it was for Savannah's. I would see her face on the ones of the other children. I remember how groggy she was and how small and helpless looking, then when I saw this baby,he was so small, he looked a lot like Xander. I started thinking that, that will be him, and that will be us walking next to our baby. I saw the faces of the worried parents, and the red and teary eyes of the mother. My heart went out to her. I wanted to give her a hug and tell her that I know how she felt and that everything will be okay. I overheard this family sitting next to me talking about how traumatizing it must be for all of the small children to go through surgeries and stuff, and I just kept my head down looking at Xander through watery eyes, trying not to start crying. I was thinking of him and Savannah. They are so strong. After our first appointment, my friend who works at Primary Childrens meet up up with us for a bit. It really made my day, and made me feel not so alone. I really needed that hug! Thank you!Yesterday our results were good, and I'm so thankful for that , but it's not over yet. In three weeks the surgeon want's to have a follow up and will probably do a biopsy to see if Xander has Hirschsprung disease. It is one of the secondary features of BBS. I'm so thankful that everything else is okay. The surgeon looked at Xander and then got out this long metal tube thing, and I'm not even going to say what he did next. It was so sad. I'm so glad that Xander is too young to remember all of this, because I'm even scared for life. Xander screamed and bleed some more and then he gave me a small plastic version of it, that were suppose to do at home once a day to keep him stretched out, and not heal back the same way. I'm not sure that I can do it, and I'm so dreading it. On the up side Xander gets to stop taking the Neocate formula,"Yea!" because it was making his gastro. reflux worse. The GI doctor was going to have us give him an antibiotic to help clear up his gastro. reflux, but I told her that he has already been put on an antibiotic every day for his Kidney reflux, so were going to wait and see if it will help clear it up in the next few weeks and if not she will put him on another on top of the one he's on. Over all, Xander is doing good with his GI stuff. Thank you everyone for your kind thoughts and prayers, and all of your comments of love and support. It really helps me to know that we have such wonderful friends and family who care so much and are here for us. I love you all so much. Thank you!
Hirschsprung Disease- Google Hirschsprung Disease Gene Reviews to find out more about the disease.
The genetics at PCMH say that they use Gene Reviews and trust their information over any other sites.

Vesicoureteral Reflux

Xander had his appointments at Primary Children's Hospital today. First they had us go back . I don't remember what it was called. It's probably one of the worse things a little guy can go through. They put a catheter in him, I couldn't bare to look. Then They put the IV in his wrist. It collapsed. They tried his foot next, then his head. It was so sad. He had to lay there for 45 minutes. He screamed the whole time. All I could do was hold his hand, wipe away his tears and dip his pacifier in a cherry syrup for him to suck on. It was so sad. I tried not to fall apart. Next they took out the IV. We went to another room to have them do a Fluoroscopic voiding cystourethrogram (VCUG).
When he looked at his right kidney, he went silent and went to call for the doctor. That really scared me. They had him moved to different positions, and after a while they were done. The doctor just told me, with a nice smile that he was going to send the results up to urology. That scared me even more. I felt like they knew something and I wouldn't find out for over an hour and a half. Later at his Urology appointment the doctor told me a bunch of stuff that I only remember bits and pieces. I really should start taking a recorder to appointments. He said that Xander's kidneys aren't very good to start with. He has Vesicoureternal Reflex, level 5, which is the worst. We have to give him an antibiotic every day to keep away infection, which could cause kidney damage. We're going back in 6 months. After a year if his kidneys have gotten worse or look the same They are going to have to do surgery to fix them. It's very unlikely that they will get better where he's at level 5 and born with it. Right now I'm just praying that he won't get any infections and that I can maybe pull myself together for tomorrows bigger day of appointments. I just don't know what else to say. I can't stop crying, and who knows what they'll find tomorrow. If you want to see more information on Vesicoureteral Reflex here are some sites.
www.pedisurg.com/PtEduc/Vesicoureteral_Reflux.htm
emedicine.medscape.com/article/439403-overview

Savannah's Diagnosis Update

Today Savannah had her appointment with the lady with GIANT steps. Afterward she told me that Savannah is in the autistic spectrum. She's going to call me before the end of the week to let me know Savannah's score and where she falls in the spectrum.

Savannah's First Day of School!

These two pictures are of Savannah's senond day of school.

Savannah's first day!
Savannah was so excited to get on the bus!
Savannah's teacher is so nice! She says Savannah is so good at school!
It took us forever to get to the bus stop because Savannah had to look at and pick up rocks.

Hair Flowers

This last week I went a little flower and jam crazy. Sorry Court. I just feel like I have to stay busy. It makes me feel better. The jam is on my food blog. The reason that the pictures of the hair flowers and headbands are all on me is because Savannah was in no way going to let me put one in her hair, let alone stand still to take her picture with them.So, sorry! My hair looks really scarry and I didn't do my make up.



This one is my favorite! I love how it looks vintage pink!


This one is my other favorite. I made it to go with this outfit for Savannah.













I made this clip board and notebook for me to use for Young Womens.





I love scrapbook paper and modge podge!

Fun Toddler Hair Styles

Good News and Bad News

The good news is that the doctors are looking at everything to find out what is wrong with Xander. Xander has gained back the three ounces that he had lost. He's now 12.8 pounds!The bad news is that when the G. I. doctor looked at Xander, she noticed that his rectum was very small. She had the Pediatric Surgeon come in and look at him. He tore it. It was the saddest thing ever. I felt so bad for Xander. No one should ever have to go through that. There was so much blood. Xander was crying harder than I've ever seen him. It's so hard watching your child in pain.He said that Xander has Anus Stenosis.He has to go back to the surgeon on Wednesday so he can try to tare and stretch it more, and hopefully he won't need surgery for it. He has to go to a new formal called Neocate. Xander has GERD reflex disease. The formula is for infants who are Hypoallergenic.They are going to have him get an x-ray of his small intestines. I have to make the appointment for that. They are going to have us go back to the Pediatric Gastroenterology so they can do a UGI barium on Wednesday also. They want to see if his intestines are in the right spot and if the openings to and from his stomach are big enough. People with BBS can also have Hirschsprung disease. I really hope he doesn't. Next week Xander is also going to radiology and urology for his kidneys. We'll be at Primary children s a lot next week. Savannah is also being tested for autism on Monday. It's going to be a very busy week.

Good News!

I have really good news! When called the G. I. specialist today there was a cancellation! We are going to the G. I. specialist at Primary Children s on Thursday! I am so thankful! I took Xander to his eye appointment to Mayran Eye Center at the Primary children s in Riverton today. He looks good, but they weren't expecting to see anything until he's older anyway. Their eye doctor has actually seen a few children with BBS. He gave me some more information about it and I asked him what I can expect with Savannah and he told me that Savannah is really too young to tell anything yet. The next step for her will be glasses, but hopefully not for a year. I didn't realize that there are more than one type of eye diseases that people with BBS can have. We just have to wait to find out what she will have, but he also told me that there is no cure for any of these degenerative diseases. One of the hardest things with BBS for me is that everything is a waiting game. I really wish that I could just have a doctor tell me everything that will be wrong with my children. I hate not knowing, and then also knowing that there's nothing that I can do. I don't know what to prepare myself for, so I always seem to think of the worse possibilities. Knowing the worse of what can happen is so scary. Thank you everyone for your thoughts and prayers, and I'm am so thankful for those of you who had fasted for Xander on Sunday. I can't even describe how thankful I am. It hurts me so much watching Xander go through all of the pain and not being able to do anything for him, but hold him in my arms and tell him that he's going to be okay. Now, I can only pray that they will be able to find out what is wrong with him, and be able to fix it.

Learning about BBS

These are some of the BBS sites that I have found the most helpful in learning more about BBS. The first two are the ones I go to the most for answers. There are also very touching stories of other BBS families.

www.lmbbs.org.uk/
mlmorris.com/lmbbs/page1.html
hmg.oxfordjournals.org/cgi/content/full/10/20/2293
www.ncbi.nlm.nih.gov › Bookshelf › GeneReviews
www.blindness.org/index.php?...292%3Abardet-biedl-syndrome