Monday, June 28, 2010

What's in my camera?


I downloaded all my pictures in my camera and finally got them on here. We have been busy playing with my family that is all here from back East.

This is Pack Meeting last week. Trevor's Den did a skit that one of the other kids wrote. It was so cute!

Trevor earned his Bobcat!!!! He was so excited to be able to earn it and get the award at Pack Meeting. It's nice his dad is the Cub Master so he presented it to Trevor.

He doesn't look very happy here, but I promise he was excited. He just doesn't like being in front of people.

On saturday night was the annual South Ogden Days. We are lucky to live right behind the park so we can enjoy the fireworks from our backyard. Scott found an old box of sparklers and got them out for Trevor. We realized he has never done them before. He was nervous at first, but got the hang of it pretty fast. He loved it and has asked for more on the 4th of July.

Today most of my family and I went out to Antelope Island. It's been years since I was out there and when I was there I didn't do anything. So it was kinda interesting and I learned some things. Here are a bunch of pictures from it.
Visitors Center

Display of Brine Shrimp (that is harvested in the Great Salt Lake)

Great Salt Lake and the Marina.

This is a saddle at the Ranch House.
This is the old Ranch House.

And old Cellar.

A BunkHouse of some sort.

The Kitchen in the Ranch House.

The laundry room in the Ranch House.

Dining Room in the Ranch House.

The Living/Family Room in the Ranch House.

Horses in the Corral at the Ranch House. Josh loved them.

And the chicken coup at the Ranch House. Josh kept sticking his fingers through the chicken wire. About got his finger pecked off a couple times. Silly kid!

And after all that, I don't have any pictures of the Buffalo we saw. I was driving everything we saw them so I couldn't take pictures. Oh well.
It has been a blast and so amazing to have my family here from out of town. I haven't seen some of them for 6 years. And I haven't met 3 of my cousins kids. I am looking forward to our huge family reunion this saturday. I am sure I will have lot's of pictures!
*** Just a side note: The pregnancy is going good. My blood clot is stable and will be there the rest of the pregnancy. Other than the ton of restrictions I have, things are going as good as can be expected for me now. I have another appointment on July 7th and I hope she can tell me the gender. Wish me luck!

Thursday, June 17, 2010

Baseball games and the Pregnancy scare

Tonight was our last night of T-ball and Baseball. Technically last night would have been Trevor's last night, but the games got cancelled due to the weather. So they both played tonight. I got a couple pictures of Jordan (finally) and then some video of Jordan tonight, Trevor tonight and also Trevor on monday night. Enjoy!

Now for our pregnancy scare. I am not sure I guess if you would call it a scare, but it has sure scared me!
I woke up sunday morning with a pain in my leg. I have been pregnant 3 other times, so leg pains is nothing new. But this one felt different. I had a really bad headache on sunday so I spent most of the day in bed. Monday I woke up and my leg was hurting a little worse. Sometimes when I put weight on it, it would really hurt. I had a lot to do that day and then a birthday party for my sister that night and a Baseball game. By that night it was hurting pretty bad. I called my mom to see what she thought. She told me to call my OB the next morning. I got up that next morning and had to take Trevor to an appt with his psychologist. I decided to just see how it goes. I get home and after my mom called to ask if I had called... I gave in and called the nurses line. They immediately told me to come in for an ultrasound on my leg. I was a little annoyed since I had to take all three kids with me on such short notice. I was almost ready to bag it, but decided I needed to just make sure it was nothing. So I was very surprised to find out I have a blood clot in my leg. It's a good thing I did go in. Now I have some nice restrictions and I am at risk for more clots the rest of the pregnancy. Just what I wanted to know. I am going back tomorrow to have it checked again and see if I have to go on some blood thinners. Awesome. I will keep you posted.

Tuesday, June 15, 2010

Music and my Angel

I made a change to my blog that you might already be noticing. I added music again. I used to have it on my blog, but took it off several months ago.

Let me tell you why it is here and hopefully you can take a second to listen to the first song I have on there.

Recently two of the blogs I read daily, with special needs kids, have passed away. There is nothing like seeing what a family is going through and how hard that must be to put your own life back in perspective. I have never met either Carter or Ben, but have been profoundly affected by their stories. I have done more soul searching than ever the last couple of weeks. I have found some great strength and peacefulness through music. I came across the song 'He's my Son' about 2 weeks ago. I have to be honest with you and tell you it got me. I was very teary eyed while I replayed it to really listen to the words. It's amazing. If you have some time.... please listen. You won't regret it.

Now.... I will finally let you all know what 'Angelman Syndrome' is. I will refer to it as AS... so I don't have to type it out several times.

Here is the medical version of Angelman's.

ALL AS kids have:

~Normal prenatal history and normal head circumference at birth
~Normal metabolic, hematologic and chemical laboratory profiles
~Structurally Normal Brain by MRI or CT
~Delayed attainment of developmental milestones without loss of skills.
~Speech Impairment with receptive language skills and nonverbal communication skills much higher than expressive
~Movement or balance disorder, usually ataxia of gait
~Behavioral uniqueness, including frequent smiling or laughter, happy demeanor, often with hand flapping movements, short attentions span.

80% of kids have:

~Delayed or disproportionately slow growth of head circumference, ususally resulting is absolute or relative microcephaly by age 2.
~Seizures, usually starting before three years of age.

Fewer than 80% of kids have:

~Flat back of head (brachycephaly)
~Sucking and swallowing disorders, excessive chewing and mouthing behaviors.
~Feeding problems in infancy and early years
~Uplifted flexed arms during walking
~Extreme sensitivity to HEAT
~Sleep disturbances
~Attraction to/fascination with water.
~Sensory Issues
~Severe Constipation

So there you have the medical facts on the signs and symptoms of Angelman's Disorder. The chances of a child having AS is 1/15,000. And just to reiterate what I did say in a previous post, AS is a chromosome disorder. Specifically a mutation on the 15th chromosome.

So what does all this mean?

There is no cure. The only treatment is to treat symptoms or problems that are caused by AS. The good news about AS is that it is not a regressive disorder. Which means all skills that Josh gains, he won't lose. It just is so much harder for him to gain those skills. Speech is a big one with AS. Most kids are not verbal... at least fluently. I have found some research that says some kids have learned up to 60-80 words. But they will always have problems with verbal communication. They do understand most everything, but just can't communicate.

If you have any questions about AS, please feel free to ask away. I will do my best to answer them and if I can't, I have my sources to find the answers. I think I have accepted his diagnosis just fine...... it's just been nice to find a name to all the weird diagnosis' Josh has. He is such a sweet kid and I have said over and over... he is an angel. He deals with alot and he puts up with alot, and he is still just happy as can be. He is such a special and sweet boy.

Thursday, June 10, 2010

Josh's Birthday, Catch-up Post

Better late than never, huh?

We finished off Josh's birthday celebrations this past sunday. He got alot of fun toys at this birthday party and was in heaven...... once he opened them. He would rip some paper off a present and then walk away and we would spend 5 minutes trying to get him to come back and keep opening presents. He wasn't too excited over that part, but was happy to find toys (mainly cars) inside once he did open it up.

This is him blowing out three candles on his special dairy free/egg free cake recipe I found recently (and I am in love with!). He was such a big boy and really was able to blow them out again. I am so proud of him!

Now for our other big changes going on. We knew when we found out we were going to have another baby that we were going to have to move Josh out of the crib. I was originally going to wait until this fall to do it, but changed my mind. Josh usually takes a long time to adapt to change so I thought now would be better so we could use the summer to adjust before the big changes of preschool this fall begin. I was quite nervous about this whole idea but I knew we had to do it. I am not buying a second crib for this new baby. So I went last week and picked out some bedding that is perfect for Josh... Airplanes! He loved them. I also took down all the blue jean teddy bear stuff we had (that we originally decorated with) and I even got curtains that matched his bed set. I think it turned out cute and it was fun to get some new things for him.

This is just a close up of his bedding. Anyone that knows Josh knows how much he loves airplanes. So this bedding set was so perfect. I could not have asked for anything more appropriate for him.

Now for the changes in our room. Until we get our tax refund back in february of next year, we can't finish off bedrooms downstairs for Trevor and Jordan. So since our baby is due in december, he/she will be bunking with Scott and I until we can get everything done. So we moved the crib into our room.
Also after much thinking about it, I realized I had not one single place to put stuff for this baby when we start buying clothes and such. So I spent days on looking for a deal on a dresser/changing table so I can have somewhere to change the baby and somewhere to at least put clothes. I found several I liked, but I was always too late. So I finally lucked out on tuesday and found this one for 85$. I was so excited. It is very solid and sturdy and has lot's of room.

I am excited to have this big change done and over with. And I am so happy that Josh has done excellent on the move to his big boy bed. We have him off night feedings now so things are working well in our favor. He loves his bed and I hope it continues to go well.
Now for other news...
The kids have been out of school for almost 2 weeks now. I am ready for them to go back. LOL!! Trevor is going through a med change right now and has not been the most pleasant to deal with. He has a follow up appt. next week with the psychologist and I am hoping we can do something different. The boys are a little bored now that they don't have school and I have been trying to do things to keep them busy. I have not felt the greatest the last couple weeks, so it's been hard to balance doing things but not over doing things.
I had another OB appt. Things are looking good, and we have a very wiggly child. I have to have lab work done each appointment now and will start the sugar testing soon. Yuck. My favorite part. I am hoping another few weeks and maybe I will get that 2nd trimester boost of energy. We'll see.
Other than that we are all doing good. The kids are still doing baseball and T-ball and will for another week and a half. It has been fun to see how well they are doing and enjoying it. Trevor I think has some of his dad's talent and really loves to play. I think he might just be our baseball player.
I will try to do much better at keeping this blog updated. I hope I can get into a good summer schedule and life will mellow out some. LOL... here's to hoping anyway!