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Lindsey's Time of Year!

I again want to thank Lindsey for keeping up on our blog. I really do appreciate the hard work she puts into the great video clips, pics, etc. For anyone that knows Lindsey, this is her favorite time of year. She loves the Christmas season and loves to share it with her friends and family. She works so hard to make it special for the kids. I hope someday they will understand their Mother's incredible sacrifice to stay at home and be a Mother, among many other things, to them. She has blessed our family immensely! Thanks Honey, for all that you do and Merry Christmas!!!

Christmas is coming

Well, Disneyland is over and we are on to Christmas. This is such a great time of year. We are already starting to do some fun things. we try to have a small activity every day. We have already watched The Grinch and written letters to Santa. Tomorrow Emery will dance at the Festival of Trees and then Kiley and I are volunteering there after. It's a wonderful magical time. I'm excited to have some good family fun and spend some time with my hubby. He has a couple of weeks off. YAY!

Disneyland

Well, we had another successful Disney Vacation. Unfortunately for Alex we may never get tired of going there. It really is the happiest place on Earth. There is something magical about seeing your kids experience all the fun it has to offer. Jax was a pretty good boy. (as long as you kept him eating) We had lots of fun. It's not a peaceful and relaxing trip but it is a good time. Thank you Alex! It is always sad when we have to leave, but it is nice to be back home. We get to enjoy a fun Christmas season with each other and I am grateful for that. Here is to next October! (Wink, Wink)

Fun, fun!

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Lions and pirate-princesses and Dorothy, Oh My!

Hi everyone.
Well, Halloween has now come and gone. It was a busy few weeks. We had lots to keep us going like carving pumpkins, decorating cookies, making candy apples, school parties and trick or treating galore. You know you are getting old when you have a child who is now too old or cool to dress up. We tried to talk Kiley into being Sarah Palin, but it was a no go. Haley was kind of a pirate princess-rocker hybrid. Emery was of course Dorothy. She loves her sparkly red shoes. Jax was the cutest cowardly lion you have ever seen. He hated his costume and spent most of the day with a very grouchy scowl.

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Happy Birthday baby boy!

Wow! Our little man is 1. I can't believe a year has gone by since we first met our beautiful boy. It's been a crazy year, trying and wonderful, full of ups and downs. There are still many days that I struggle with his diagnosis, I'm sure at least partially I may always. Sometimes I get nervous and overwhelmed about what we are in store for. The future is a little scary and unsure, but the one thing that is not unsure is the enormous love we have for Jaxon. He brings so much joy and happiness to us. He is all smiles and charms everyone he meets. It's not uncommon for me to get 10 people a day tell me how happy or smiley he is. He is working twice a month with a physical therapist and we hope that he will soon get the hang of crawling. He has sturdy strong legs. I think he might be closer to walking than crawling. We love him so much and have been blessed by having him. Happy birthday baby boy!

Jaxon's new toy

So I came across this by accident on Ebay. It is a neck floatie for babies. It says you can start using it when the baby is 4 weeks old. I thought it looked fun so I bought it. We haven't gone swimming yet, but Jax does like using it in the tub. He just floats around and kicks his legs. It's kind of funny.

Another Great Summer

As Lindsey mentioned, it was another great summer. It has felt like we have been on the go constantly. I hope the kids look back and enjoy the memories we've created together. I know Lindsey and I are grateful for the opportunities we have been given to travel around and do fun things with our little ones.

We had the Physical Therapist at our house today working with Jaxon. He is slightly behind on some of his motor skills. We are working with him to do more rolling, crawling, etc. He has gotten quite adept at getting his way and throws little tantrums when he is made to do new things. I am grateful for the help we are receiving to better Jaxon and his development. I cherish each new bit of progress he makes.

My girls are growing up too quickly! It saddens me to see them mature so quickly. I know that is the way it is, but sometimes I wish I could freeze time. They are so beautiful and fun to be with. I enjoy playing around and being a big goofball with them.

Thanks again Lindsey for making this blog and the wonderful smilebox clips. They make me tear up, but in a good way. I love you and the kids with all my heart!!!

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Jax

new blog look

Thanks to Shana for letting me copy all her ideas. I'm not very computer savvy so I have to copy others.

Emmies 1st day of kindergarten...

Well, we got through her first day of school. It wasn't as hard as I had anticipated. She was very excited and so ready to go. Her sisters helped her pick her outfit out the night before. She of course looked darling. I don't think it will be much of an adjustment for her. She has gone to pre-school for 2 years and she knowsprobably 10 kids already, from our neighborhood and school. I think the most exciting part of her day was getting to ride the bus home.
So now Jax and I will have a couple hours in the afternoon to ourselves. What will we do? Watch soap opera and eat bon bons? Maybe. Clean the house? Probably not. Take a nap? Sometimes. Shop? Definetely!

School is in session.

Well, the girls have begun yet another year at school. Haley is in 4th this year. She likes her teacher and has had some fun days already. Kiley is in 7th grade. She is going to a school that we are not in the boundaries of. She chose to go to this school because it is a brand new building and to make a fresh start for herself. This means that I get to drive her to and from school everyday. Yay! I'm not a morning person so it has been a bit challenging and it has thrown Jaxs' schedule all off, but it will force me to be the good mom I know I should be. Last year I went back to bed after waking the kids up. I had no idea if they had eaten breakfast (mostly no) or what they were wearing. (Sometimes awful) Lets keep in mind that I had a new baby. Anyway, I plan to make breakfast occasionally for them and all that good stuff. Wow, I'm really going all out.
I worried all day on the first day of school about whether Kiley was eating lunch alone. She only knows 3 people from her old school there. She told me she was sitting alone and then some girls from a couple of her classes came and sat by her. I was so relieved. Sometimes these Mama bear instincts kick in and you feel so protective. She is really liking most of her classes. Her favorite is called CTE. Basically it's home ec.
Emery got her kindergarten shots a few weeks ago. She was so brave. She starts school next Tuesday. She has been bummed that the other girls get to go to school this week and she doesn't.
Jax is just as cute as ever. He is getting so big. He seems to be a lot happier and better tempered these days. He still loves to be held and throws a fit if he doesn't get his own way, but he is sleeping a lot better which I'm sure is helping. We are trying to teach him a couple of basic sign language signs. Milk, more,... okay so maybe 2. He did milk once, but it might have just been a coincidence.
This summer has flown bye. I feel like it was a good summer. We made the most of it I believe. We managed to fit in several Star valley trips (thanks grandpa! We miss you) a trip to pineview, Lagoon, Cherry hill, Hogle Zoo, many park days and lots of fun evening walks. You've got to love summer.
I will post some pictures of their first days of school soon.

Summer so far

Well, lets see...
This summer has been pretty good so far. The kids aren't driving me too crazy yet. We have had a couple of trips to Star Valley.
Kiley went to youth conference and then a week later to girls camp. Alex got to stay over one night with her as the priesthood holder. He kept threatening to embarrass her in front of her friends. (I think he was on his best behavior.) He did however, call me and tell me that there weren't enough tents so he was going to have to sleep in with all the leaders. Funny man, ha ha ha!
I have been trying to keep the kids entertained with sleepovers, adventures at the park, water balloon fights. I think it has been good.
I'm loving the warm weather, the walks in the evenings and getting icee's. Yum!
Emery was in soccer for a few weeks. She is an awesome goalie. She made a goal at the exact moment my head was turned talking to Kiley. Of course, that's my luck. We are proud of her.
Jax now sits up by himself pretty well. He is getting so big. What a chunky monkey. He has 2 teeth and 5 or 6 coming in on top. He isn't afraid to use them to bite me. (unfortunately) He has really strong legs and loves to jump up and down while holding him. He's a sweetie.
Haley had a dance performance a couple of weeks ago. She had been working really hard in her class and did an awesome job. She just repeats the dance as she walks all around. I don't even think she realizes she is doing it anymore.
Well, that's all for now. We will update again when something exciting happens.

Summers here

Well, I'ts here. I have fellings of excitement & dread. I love that I don't have to wake the kids up early, or have them home in bed at a certain time, but trying to entertain them for 2 1/2 months is quite a task. Already Emery is begging for things to do.
We don't have big plans this summer. We will be going to Star Valley as often as opportunity will allow. We have a trip to Wolfcreek with Alex's family in July. Other than that I guess it's swimming pools & parks. I'm going to have to get creative to get the kids up off the couch & doing something active.
Jax had his cardiology appointment the other day. The doctor said that things seemed good. His aortic stenosis hasn't progressed any more. Yay!!!! We will take whatever good news we can with this little guy. He's getting such a cute personality. He is now eating baby food and baby cookies. He loves to drink water from a cup. Sometimes I forget to hold him away when I take a drink and he always reaches for the cup and spills on both of us.
Well, that is the update for now. We hope you will check back often.

First off, I want to thank Lindsey for taking the initiative to start this awesome blog. I hope that our family and friends will check in on the blog now and again and make comments. I cherish the family and friends that we have even though I don't show it enough! So, THANKS to everyone who has supported our family throughout our lives, but more recently in regards to the first days we found out about our wonderful son Jaxon and his newly diagnosed condition.

It is impossible to explain what it is like to find out your child wasn't the healthy, normal, perfect little child you thought he was at his 2 week check-up. I will never forget a single word the doctor spoke to us that day. I've always been able to think or work my way out of any problem that I was involved in. I still very much have that mentality with Jax. We will work with him and give him everything we can. However, at the end of the day, there is no "cure" for Williams Syndrome. Right now there is a mixed bag of emotions. He is incredibly cute, social and shows good development. For that I am extremely grateful! However, on occasion I am overwhelmed by his future. I worry for his little heart and body and I worry for his mental/developmental progression. Although I do have great concern for Jaxon and his present and future well-being, I am largely positive about not only Jaxon's life, but our family as a whole.

Lindsey and I have overcome much, in fact, there are several of you who still owe me money on betting we wouldn't make it past our first year of marriage (12 year anniversary in July). I feel that Lindsey and I can overcome anything together and I believe some day we will look at our experience with Jaxon and be grateful for the opportunity to raise a child with special needs. I am also confident he has much to give and teach us. He has already taught me many things, with the most important being unconditional love. So far he has been nothing but pure love and satisfaction for me. If I am ever feeling down about his condition or problems he is having I just need to hold and/or visit with him and my mood completely changes. Anyone who has interacted with him knows that he has that impact on people. I have no doubt that his infectious smile and cuteness will overcome anyone that meets him throughout his life.

Well, I have probably bored anyone reading this to death. I am almost done. I just want to let Lindsey and the girls know how much I love them . It can be easy to focus too much on a child with special needs and leave the other children behind. I vow not to do that. They are so incredible and they help around the house and with Jaxon so much. I know that God has blessed my family and I greatly and I could never repay him for what he has done for us. Again, thanks to everyone who has helped our family throughout the years and don't be shy with your comments. We are going to continue to need everyone's support!

Another school year come and gone

I can't believe it is almost summertime again. I know how cliche it sounds to say that it seems like it was just yesterday.... and yet it does.
My little baby girl who is no longer a baby will be going into Kindergarten, my middle in 4th while my oldest baby will be in junior high. Aghhh! Where did the time go?
This is going to sound awful but I practically (or maybe actually) jumped up and down on Kiley's and Haley's 1st days of Kindergarten, but the thought of Emery's 1st day brings tears to my eyes already. I hope this has less to do with favorites than it does with my own maturity and growth as a mother. I think I tend to take less things for granted than I once did and I understand the importance of time. I won't lie and say that there aren't those moments and sometimes days that I long for the constant tattling and screaming to stop or the "mom, mom, mom" said repeatedly in my ear to go away, but I also try to appreciate the here and now.

Good Analogy

Welcome to Holland (aka the beauty of Holland)
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability -- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful vacation plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very, very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, "Welcome to Holland."

"Holland?!?", you say." What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy. "

"But there's been a change in the flight plan. They landed in Holland and there you must stay."

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for awhile and you catch your breath, you look around, and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, 'Yes, that's where I was supposed to go. That's what I had planned.'

And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

So where do we go from here?

Well, honestly we don't know yet. We do know that because of his aortic stenosis that he will continue to be monitered 2-3 times a year to make sure that it is not progressing more. Chances are though that it will and he will have to have heart surgery to repair it. His next ekg is in June. I think that it will be more advanced than it was the first time. He now sweats often when I nurse him.
We continue to read material online and have talked with another family who's 1 year old daughter has Williams. Some times I get encouraged by what I hear and see and sometimes it is difficult to picture our future.
Right now we have no choice but to wait and see what Jaxon's capabilities will be. Will he function on the low or the high side of the spectrum? I take encouragement from the early intervention that we will be able to work with him during some of the critical developmental stages and that it might make a difference in his outcome.
Alex and I decided that we weren't going to put limits on his capabilities. We will let Jax show us what he can and can't do. If we went into this with preconceived notions than that's all he would ever be. Internet articles and other peoples experiences.
We hope to do the best for our little guy. We know the road will be bumpy but the journey will be worth it.

Jaxon Baby

Well, I thought I would start this blog to update people on our cute family, but also as a resource to keep track of our progress with Jaxon. This is probably mostly going to be for Alex and I to be able to get our thoughts out and to help us remember certain things, but I hope that it may become a resource for other families dealing with this diagnosis.
Jaxon was born October 18th 2007. Our first baby boy. We were over the moon with excitement. He weighed 6pounds 15ounces and was 19 1/2 inches long. He was the littlest of our 4 babies. I remember my mom commenting on how wide his mouth was. We went home and everything was wonderful. He had the cutest little hoarse cry. He had creases under his eyes and they would bulge a little when he cried, but that is just because he was a newborn and swollen right?
Fast forward to the 2 week baby check-up. All is well and then my husband happens to ask the doctor if he thinks his bone structure around the eyes is okay. (because of the bulging) The doctor feels and puts us at ease that it is fine and then he says... "as long as we have all noticed that something is off in his appearance, let me get a book and show you what I think it might be."
Then he left the room to get his book. He was gone for probably 10 minutes and at first we were still fine until it sank in that he was getting a medical book to show us what our baby might have. I turned to Alex and said this is not good.
When he came back in with the book he started reading us the characteristics of Williams Syndrome and I immediately began to cry. He said he would give us a few minutes alone to look over the few pages in this book. My attention immediately went to a picture that although not as cute, looked a lot like my little guy, and then I saw one of the characteristics was a hoarse voice.
Well, this is the part where I tell about our amazing family. When I left the hospital my dad happened to call. I of course was still crying and tried to tell him what the doctor said. He then had my mom call me. My mom was at a doctor appointment with her dad. My aunt was also there. So as I am telling my mom what little I know about Williams Syndrome, my aunt is on the phone to my uncle who is doing an internet search about it. We got home and my mom showed up, and 2 of my aunts, one with dinner. I always liked having so many family members near us, but it was in this moment that I realized the true blessing of it.
We went the next day to Primary Children's to have a blood test done. This would take 8 days to get the results. A few days later we met with a geneticist who checked him over. By this time we had done a significant amount of internet searching and reading and was fairly familiar with the characteristics. One of them was a wide mouth (check), one of them was that they tend to be on the small side of things and probably would be smaller than other siblings (check), and we already established the hoarse voice. Well at the end of the meeting he told us he wasn't positive that he had it and would put his guess around 60-70 percent sure.
All we could do at this point is go home and wait 2 more days for his call.
Friday rolled around and Alex had to work. I didn't want to be alone when I got the call so I asked my mom to come and stay with me. Minutes seemed to drag by and every time the phone rang my heart would drop. Finally I couldn't take it anymore so I called and left a message with the geneticist to please get back with me. He called back a few minutes later and confirmed the diagnosis. I was devastated. How could I call Alex at work and tell him that his little boy was not going to be the little boy that he had dreamed about. I felt awful having to tell him at work. He was all alone, I was lucky enough to have my children, mom and sister with me. So, I called him. I don't think I really even said much, but I didn't have to. The sobbing said everything. I decided to get the kids in the car and drive to his work so we could be together for a little while.
For the next few weeks, I would just start crying, anywhere, the grocery store, in the car, on the phone while paying bills. It got to the point where every time I had a little sniffle my 4 year old would say " baby again mom?"
It has now been 6 months since the diagnosis. I would say that most days are good ones. We have been blessed with this beautiful amazing boy who is love. That's the best way I can describe him. He is often grouchy and won't let you get away with setting him down, but he has this amazing spirit and feeling that accompanies him. You can't be sad about him when he wraps his little fingers around yours or when you look into his stunning blue eyes. He is LOVE.
I know that often times parents of children with different disabilities or syndromes say that they wouldn't change them for the world. I'm not sure that I am to that point yet. If I could have my Jaxon and give him his 20 missing genes(out of 30,000) I think I would. I do however know that this little angel who is now squirming around on my lap is going to be an extraordinary blessing to our family and to anyone with whom he comes in contact. We all will be better people for knowing Jax.
Children with Williams Syndrome often times aren't diagnosed until between 1 and 2 years of age. We are lucky that Alex mentioned the eyes to our doctor because although he had his suspicions about it he wouldn't have said anything until he noticed some delays in his development six months to a year later. Knowing early has allowed us to familiarize ourselves with what we can expect and to get him proper care. He had an ekg when he was 1 month old and has mild aortic stenosis (thickening and narrowing of the aortic valve) We meet once a month with a therapist who will work with him and try to help him meet milestones at an average time. So, all in all we are lucky for the early diagnosis and the chance to give our baby the best start possible.