Ultrasound and Baby news

I had my Targeted Ultrasound yesterday. That is where they do all the measurements, check the heart, make sure there aren't any problems ect. Everything looks perfect! The best news I can hear! I did ask specifically about the head size with the history Josh has with microcephaly.

And.....it is a girl for sure! I think even though I was told that last time it was a girl, I was still afraid it could change.

So it looks like I can breath a sigh of relief and get to planning!! We are going to name her Kaitlyn Margie Christensen. Her middle name is after Scott's Grandma. She is an amazing women and it will be such an honor to use her name.


That being said..... the pregnancy is going about how I figured, with some minor bumps along the way. When I went in today for my regular appointment, my blood pressure was 98/45. So a bit low. For now she thinks it is just the way my body is responding to the diabetes and sugar problems. I sure hope so. I get dizzy so much... not just a little, but like knock me off my feet and throw up. I am just going to watch the dizziness and other stuff and go back in if it gets worse. She'll just monitor it for now.

I saw the Endocrinologist last friday. He started me on insulin twice a day. At night I take a long acting to help with the fasting sugars, and just a short acting with breakfast since my morning ones were higher. But he did blood work and found I am way under doing the carb eating... I need to have 45 per meal and 15 per snack. So I started doing that and emailed him the results monday night. Big surprise that once I started eating more carbs (I was really cutting them out before because of the fear of high sugars), they skyrocketed. So now I added insulin for all meals and upped the insulin I was taking already. So far.... still high. I remember with Josh we never really got the fasting sugars in a great place. It has something to do with your liver producing sugars at night while you sleep and your body not using them since you are resting. Nothing I have any control over.

So it looks like for now..... the rollercoaster of blood testing and insulin is going wild. I hope by next week to have it going better. I will email him on friday with my last few days of levels and we'll go from there. I am just glad that I can do this by email and not keep having to go back. Small blessings.


As soon as I can get the pictures to scan from my ultrasound yesterday, I will get them posted.

Not dodging the bullet this time either....

I found out this week that my Gestational Diabetes is back. I knew it would, but part of me still was hoping I could dodge the bullet. I did the 3 hour Glucose test this past wednesday and got the results on thursday. I have my monitor now and am checking it at home. My OB has been out of town, so now that she will be back this week, I will get an appointment with an Endocrinologist. I am sure it will be Insulin again this time. Especially since I have been already watching my carbs and being careful and am only 18 weeks. I still have awhile to go. Let the good times begin!!!!!

Meet my new neices!!

I finally was able to meet my new nieces this past tuesday. Scott went to the hospital to see them, but since kids aren't allowed, I waited until they were home and settled in. They are soooo tiny and absolutely adorable!!


This is Andie Rae...she is the smaller one... weighed in at 5lb.


This is Cambrie Ann.... she was 6lbs.



And look at Scott hold two girls at once!!! I think he is really going to like having a girl this time around. I love it!

Feeding Clinic

Yesterday was Josh's appointment down at Primary Children's with Dysphasia (Feeding) Clinic. For once it was an awesome appointment with no huge surprises, bad news or frustrating conversations. Go Josh!!!!

Josh is now in the 27% for weight and 29% for height. Perfect. Absolutely Perfect! But I did know that Josh was doing really well. He is happy, full of energy and has actually been well and not sick all the time. It is such a relief to hear that.

So since he is doing so well, now is the time for some big feeding changes. I am quite apprehensive about it, but know it will be good. I just hate to rock the boat when things are going so well. But it's time... I know. He had some med increases with his weight gain and that was really the only other thing we are doing. We are going to try to change him over to this drink called Splash that can replace his formula. It's different from anything we have ever tried before, it's fruit flavored (they have tropical, orange pineapple, grape) and it comes in a juice box. So far he has seemed to like it OK. Here's to hoping!!! He will go off continuous feeds (can I get a wahoo???) and do 5 bolus feeds a day. We will start with food first and what he doesn't eat will but put through his G-tube over a short amount of time.

I feel really good about all the changes and I am so incredibly happy to be in a place with him that we can make some major changes. It's just hard to think about what can happen if we push too hard or things go south. I just hope it will all work out well. But we have one amazing little boy, so that helps a great deal.

And on another side note, my sister-in-law had her twin girls yesterday!! Andie was 5lb 1 oz and Cambrie was 6 lbs. We are so happy for their expanding family!! Such beautiful girls too!

Hospital Nightmare

We had quite the adventure on thursday. I took Josh down to Primary Children's to have a small problem with a front tooth fixed and a teeth cleaning. He did not cooperate at all when I took him in for his first visit. With his history the dentist did not feel comfortable doing IV sedation in the office and instead had us go to Primary's for it. He goes down there once a month to do things like this.

So it was supposed to be really routine, right? Oh no.... that just could not happen. We arrived around 9:45am and left the hospital around 8pm. Crazy. Insane. Never want to do that again.

So the reason for the long day? Josh had a reaction to the anesthesia this time. Most likely the Versed he was given. For those of you who don't know, alot of time they will give these kids a medicine called Versed to calm them down. It basically makes them lethargic and so they won't remember what happens. I have always declined it since Josh usually does well. For some reason thursday was a different story. He was really upset, would scream when the nurse would touch him, wouldn't get off my lap to play ect. So the anesthesiologist suggested some Versed. I agreed thinking it would be a good idea. Boy was I wrong! They gave it to him a little too early (it is supposed to be given 20 min before they go back to the OR) and about 10 min later, Josh was acting really funny. He seemed to be breathing harder than he should and was very out of it.. head rolling around ect. So I grabbed a nurse and they realized he had the medicine 23 min before. They brought out some monitors in the waiting room and hooked him up. His oxygen levels kept dropping to around 84% and the alarm kept going off. It was lovely. They took him back less than 10 min later. I went to the surgery waiting room. The procedure was scheduled to take an hour and a half. Thankfully I ran down to the cafeteria and got a snack. About an hour and a half later, the dentist came out to tell me that he was done and everything was fine, although more involved than he thought. No big deal. He told me that someone should be calling me within 15 min to go back to recovery with him. About 25 min later, I was starting to get this feeling that something was going on. A couple seconds later the receptionist called me to the desk to take a phone call. It was Josh's nurse from recovery. He was not waking up still and they were having to do some extra oxygen and stuff to keep him more stable. He told me he would call me again in 15 min with an update. This went on for an hour. Everytime they would say he was just having a hard time waking up and needed some supplemental oxygen. Finally they told me he was waking up and I could come back. When I went back to see him, I could hear him screaming before I even hit the recovery. Poor kid. He was out. of. control. there is not other way to put that. He was supposed to be keeping an O2 mask on, but was ripping it off faster than I could keep it on him. They moved him over to post-op and could hold him then. He calmed some and then suddenly just went back to sleep. His sats were dropping on and off down to the mid 70's. He would bounce back up pretty fast, but that is very unlike Josh. So anyway, we dealt with that for a few hours, as well as him throwing up. He was given Phenegren and Zofran to help with it, but he still threw up. A different doctor came and told me that they might need to admit him. I was a little freaked out. But then he said if he could maintain his sats above 90 with no help, for two hours we can go home. Thankfully from about 6-8pm Josh was a very good boy and we were finally released then.

It was the longest day ever. Scary and not fun. I don't ever want to do that again. The anesthesiologist is pretty sure it was the Versed that caused the problems since it was the only thing he had never had before. So needless to say we won't be doing that again. The end.

Baby Bump Update

I had another OB appt today. I was desperate to find out if we are having a boy or girl since I have to buy everything this time around. Dr. Julia is pretty sure (but will confirm 100% on July 29th) that



IT'S








A
















GIRL!!!!!!!!


How exciting is that??

Things look good, the baby is looking right on for 15 weeks and my blood clot is stable. I had to go have that looked at too. I do have a lot of pooling of blood going on in both legs now, which is another grand pregnancy complication that will just cause pain. The only solution is delivery. What fun I will have this pregnancy.

I will update obviously after my next appt, but until then.... we are really happy!

4th of July!!!

**Don't forget to pause the music to view the videos**

Since yesterday was the 4th of July celebrations here in Utah, and we can't attend large firework shows... we did our own small one this year. We only did Sparklers with Josh since he does not like any fireworks at all. I was not sure how he would do and I wasn't really keen on the idea of him holding his own sparkler. But Scott was insistent he needed to do 'normal' things... so he let him. He was in heaven!!! He loved it. He did get two burns on his fingers, but he didn't care! Here are some pictures and video of our night.

This sad face is what happened when we were all done. He was not happy about that!!! So funny!

Enjoy the videos!!

What's in my camera?

**** PICTURE OVERLOAD*****

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!

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.

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.