Ian's overnight EEG

Of all the tests this one stressed me out the most. It's really a pretty simple procedure...They hook up some electrodes to the head and it measures and records brain waves. During a normal EEG the child is sleep deprived, hooked up and the test begins when the child falls asleep. The doctor ordered a 24 hour EEG and this test requires the child to be in a hospital bed for 24 hrs. Anyone and everyone that knows Ian knows that this child does not sit still for 5 minutes let alone 24 hours. I was really worried about how I would keep him in bed and how his behavior would be in a new environment. Well, our prayers (and the prayers of so many others) were answered. I really felt as though I was witnessing a small miracle! Other than a few melt downs, Ian did fabulous! He stayed in bed for 24 hours and he kept all the equipment on. Primary Children's took really good care of him letting him order anything he wanted of the menu at any time and bringing lots of drinks and snacks. The room we were in was pretty crappy. It was right next to the emergency room and we could hear the helicopter land and leave and the ambulance come in. The blinds were also broken in the room and so once Ian was finally asleep (around 1 a.m.) I laid there wide awake because of the lights blaring in. Oh well....

Thanks to all those who prayed in our behalf. We are hoping these tests will reveal something!

Ian's MRI and Camping

The sedative they gave Ian was suppose to last for 2 1/2 hours. We all know Ian and know how he hates to be still...He was awake 30 minutes into the procedure. Luckily they were done with the MRI but they really wanted him to get two bags of fluids and each bag would take one hour. They tried giving him two doses of Versed (kinda like Valium) to make him go back to sleep but it didn't work. That was ok though...we headed home and packed up to go camping.

My dad had taken the other three down camping that morning. The drive down was so nice and quiet until Ian started throwing up. Luckily he hadn't eaten anything that day so it was just water and fluids.



We always have fun at this camp out. It's fun to spend some good quality time with our family. Ian didn't really like camping and had a hard time but the rest of us enjoyed ourselves!

Ian

Today we're heading up to Primary Children's Hospital for a MRI. This is the first in a series of tests to see if we can figure out what is going on with Ian. For the last several months life with Ian as become increasingly difficult. He started wetting his bed, then it was himself, and now he is in pull ups all day. If left alone in the bathroom he becomes a "smearer". His language has deteriorated. He has become a little more aggressive pulling any one's hair he can get close too. He has quit eating with a fork and spoon and now eats with his hands. Yesterday I gave him a bowl of cereal and without taking a bite he just turned it over and dumped it on the floor. He has started eating off of other peoples plates; he'll walk up to complete strangers at eating establishment or parties and just help himself. His moods and behavior can be very erratic. He becomes agitated more quickly and he screams and cries more often becoming inconsolable at times. He paces all day long and has a hard time sitting for more than a minute or two. He's started wandering off; I don't know how many times the neighbor or construction guy out front have had to bring him home. He refuses to go to primary; the crying starts the minute he hears it Sunday. He is having a harder time sleeping, both falling asleep and staying asleep. Sometimes he'll wake up in the middle of the night and lay on top of Millie or Owen pinning them down. He has put 3 phones and coutless other things in the toilet and the toilet is not even his first choice. I can't tell you how many things I've pulled out of the trash! This has been my summer. So, every doctor I've consulted with has agreed that two tests were in order, a MRI and an overnight EEG. Adam and I aren't confident that we'll get any real answers from these tests but at least we will be able to rule some things out. Autism is such a mysterious thing. 20-30 % of autistic kids show some form of regression in there lifetime but this number could be higher and the numbers a bit skewed because regression is a sign of autism so it's hard to know if it's a symptom or a sign. Kids with autism AND epilepsy have even a higher rate of regression. Ian is going backward. It's frustrating because I had one Dr. tell me that he'll never be normal. DUH! I'm not in denial! I don't need him to be normal. I just want to take my kids to the park without Ian pulling all the children's hair. I want to take them to McDonald's without him ripping hamburgers out of someones hand. I want to take them fishing without him screaming and crying until we just have to leave. I want to serve him a meal without having to bath him (and me, and the floor) after. I want him to use the toilet. I just want him to be the way he was a year ago; Hard but not impossible. Man I love this kid! But, I won't lie. The last 3 months have been the hardest, lonliest months of my life. It's funny, I've been told that Autism gets better every year. HA!

Exhausted

That is the only way I can describe myself yet, even that word doesn't seem quite right. This summer has been long and arduous. Ian has gotten harder and harder everyday and he has regressed even more over the summer. I never did get a handle on our days and never did have a good, working schedule. My kids have done nothing but fight and whine and make messes. I almost have to bribe them to get out of the house. Chores? ya right. I know, I'm the mom. I should be in control. I'm just too exhausted to care. I have a summer hangover. I feel bad...I should be sad that summer is winding down. I should feel bad that my kids are going back to school and will be gone all day. I don't. I need a break. I need my house clean. I need my house quiet. I need to feel like me again....

Family night at our house

When Sharilee is in town life can be pretty crazy. It's always go, go, go. For some reason this year, we haven't been involved in all the family activities. In fact, we had hardly seen Sharilee at all! Last night the family gathered at our house for dinner and fun.

Day at the Beach

Did you know we have a beach right here in Utah?




Ok, so it's not Maui but it is still a lot of fun! We met up with some of the cousins up at Daybreak where they had this beach next to their little lake. The kids had a blast and I can't wait to take them again!

Texas

Adam had planned a trip for just the two of us months ago. I say Adam planned it because it really was all his idea. I was quite anxious about leaving the kids and couldn't really even think about it until a couple of weeks before we left. We had great family members who took great care of the kids and I actually did relax and have fun.

Texas Day one- Or more accuarately called, night one. Our flight arrived at 8:00 p.m. and David picked us up around 8:30. We were starving and it was David and Julie's 17th anniversary so we headed to Texas Roadhouse where Adam and I induldged (I'm on vacation afterall!) and David and Julie had dessert. We stayed up late talking and catching up. How nice of them to share their anniversary with us!

Day two- We slept as late as we could and then went to Six Flags over Texas around noon.

We had a lot of fun and rode all of the major rides, something we could never do with the kids! I would have liked to stay longer if it wasn't so dang hot! That night we went to Cici's for pizza and then Julie and I took the kids swimming while the boys got ready for fishing.

Day three- The boys got up really, really early to head out fishing. I slept as long as I could but it was hard to sleep once Adam was gone. Julie and I headed out at noon for a girls day. First stop was to meet my friend Domi for lunch at The Cheesecake Factory.

I met Domi 10 years ago on a message board. We became really good friends (along with a group of other girls) but most of us had never met in person. I knew I would probably never have a chance to meet her again so I just HAD to meet up with her while in TX. I loved meeting her and she was just as fabulous in person as she is on the computer! Aftward Julie and I did some shopping and had pedicures! Fabulous! We met up with the boys later for dinner and some bowling.

Day four- Sunday...I got up and made breakfast which the family was less than impressed with...then we headed to church. I discovered here that to make up for the scorching heat, Texans like to turn up the A/C way too much. I was freezing! The meeting was good but I started missing my kids sitting in church with no one climbing all over me. Late that night we headed to the soccer game. I know, I know. No lectures about going to a soccer game on a Sunday.

The energy at the game was pretty cool. Garth Brooks and Trisha Yerwood were there to promote some charity (I forget which one). We were the only ones their not drinking beer and being obnoxios and it was still fun!

Day five- Adam and David went fishing again this day so I packed up and Julie and I headed to lunch. We ate so much good food I'm suprised I didn't gain 10lbs! We just lounged around after that and then headed to catch our flight. Our flight was delayed due to some technical issues (very reassuring...). It was so good to get home and see my kids who wanted to know where their prizes were. Yep, who cares about mom and dad, bring on the treats!

I'm so glad we were able to get away...I learned that I really can leave my kids and they will be ok. Maybe we can do it again...