Prayers needed for Ryan!

I can't remember the last time I was so scared for Ryan. There have been many, but, this was among the worst of them. There have been many times over the years that he has been near death and God has healed him and pulled him through. Last night was one of those times where we were again in uncharted territory and dealing with something we had never dealt with (quite like this) before with Ryan. Anytime that happens, it is extremely scary. Over the years we have had to teach ourselves how to care for Ryan. The doctors don't know much if anything about Ryan's disease, SMA. And when he gets really sick like this, it only complicates matters. We need to know what's going on so that we can give an accurate report to his doctors when we get to the hospital or doc's office. Last night, we weren't prepared for what happened. We took him into the ER after being out of town for the weekend. He got sick when we were away and we figured we could make it home in time to properly care for him etc.. He was miserable for the drive home (7 hours in the car)...poor guy. And when we finally arrived home, we realized he really needed to be seen. Of course the only place at that hour is the dreaded ER. So, we packed up our things and took him in. That was a nightmare! The ER doctor on call last night was pretty rude to us and would not listen to us. We tried to explain what we know about Ryan and he didn't seem to like that we were telling him what we wanted and didn't want in regards to Ryan's care. I think he finally realized that we know what we are talking about and started to listen to us towards the end of our stay. They could not get an IV started no matter how hard they tried. We knew this would be the case as it has been SO many times over the years. At that point, they wanted to give him fluids via his Gtube. However, the doctor wanted to push those into him at 400 cc's/hour despite our asking them to turn it down!!! Our poor guy can hardly tolerate 15-30 cc's an hour when his tummy is acting up like this. Of course, he vomitted right away. They finally released us when they didn't think there was anything else they could do for us. Meanwhile, Ryan had started acting really strange. Nothing we had ever seen him do before. He was delirious and he kept thinking he could hear the doctors say they were going to do surgery on him. He kept saying really wierd things that just made NO sense at all. Then he started babbling (almost like a baby) and was acting really hyper; even singing and humming to himself at 2 in the morning...also not making any sense at all. He couldn't even drive his chair out of the hospital! I was so worried for him. I have never seen him quite like this before. I do believe he is dealing with severe dehydration, exhaustion and probably low blood sugar issues as well. But, Ryan has never dealt with these type of of things before to this magnitude. So, it was really scary for us. Currently, he has settled down a bit, is resting (finally!) and is keeping fluids down. We are also giving him small amounts of orange juice and pedialyte and he seems to finally be doing a bit better. I do not believe he is out of the woods yet and appreiciate prayers!! I am sure this does not make much sense either as I am now going on almost no sleep and am now up with my other two who need their momma. Thanks for all the prayers and well wishes. This little boy is such a trooper and the bravest kid I know.

Elliott funnies

We have had my younger sister's little boy, Elliott, here with us on and off for the past couple of months. And boy does he make us laugh! Here are just a few of his Elliott-isms!

Grandma: Elliott, we want to take you fishing this evening because we think the fish will be biting tonight.

Elliot: (with a worried voice) The fish are biting??? I don't want the fish to bite me!

Grandma: Elliott, I'm going to go and get ready to go, in the meantime, how about you go and play in the living room with your toys, okay?

Elliott: What's a "mean" time grandma?! (my mom says he was worried about "mean" time)

Me: Elliott, you need to get off the couch. You have your shoes on and I don't want them up on the couch.

Elliott: These are "clocks" not shoes. (he calls his crocks, "clocks". LOL)

And of course, I have to add in one that happened with his mommy a few months back.

Elliott: What are you making mommy?

Kami: I'm making brocoli!

Elliott: Oh. (thinks for a minute) Do you mean Brocoli Obama??

This little guy makes me laugh so hard. I know there are more but I can't think of them right now. He cracks us up!

Joshua

Just a few recent photos of Joshua. He LOVES to take a bath in our kitchen sink. Each of our kids have always enjoyed that. I usually turn the water on so it's just a slow steady stream and he enjoys letting the water run through his fingers or different cups I put in there for him. It's really not a bath. Just playing in the water. ;) In the other pictures, he's wearing his Oregon Duck outfit that my mom got him when he was only about 6 months old. It finally fits him now at 25 months old and it's size 12 months. The sleeves on the jacket might be a little short, but the pants fit perfectly. Maybe he's just going to be really short. LOL :) Reminds me so much of Ryan when he was little. Guess he takes after big brother in that way.

Father's Day 2009

We all enjoyed Father's Day yesterday. We started out the morning with the kids giving Steve their gifts and home-made cards. We then had breakfast and went to church. After church we had Steve's dad and my parents over for a really good bbq lunch! We bbq'd steaks and salmon. (Yum!) Afterwards, we played outside even though it was a bit chilly yesterday! It was a good day. Here are a few pics of the kids with their daddy.

Playing outside

Since Elliott has been here, the kids have really been enjoying getting the wagon out and taking turns pulling eachother around the neighborhood. Usually, it ends up being Jorie doing the pulling since she is the oldest. But, Joshua has given it a try and so has Elliott. Yesterday, I pulled all three of them around. Joshua loves anything with wheels and whenever we play in the front yard, he usually has to bring one of his cars or trains to push along the side walk. He is a miniature Steve, that is for sure!

Great Grandpa visits!

Steve's grandpa lives in a retirement home less than a mile away from us. And every once in a while he comes over for a visit and just to hang out with his great grandchildren. We made him a cotton-candy snow cone and he sat and watched the kids play on the front porch. He enjoyed helping Joshua play on Jorie's scooter. It was just such a beautiful day outside. Not too hot and not too cold. Steve had gone to the store earlier in the day and brought back a couple candy treats for the kids. Joshua and Jorie are enjoying their suckers in the picture of them sitting on the front porch.

Graduating from Kindergarten

I am in awe that another school year has already come to an end. Where has the time gone? It seems like just yesterday that I was getting Jorie ready for her very first day of Kindergarten! Today, Jorie's school put on a little ceremony for the kindergarten classes. It was pretty cute. Ryan and Jorie both have one more day of school. But, tomorrow is a half day. Ryan's school will spend that time signing year books and Jorie's school is having a field day/BBQ/bike race event! I will never take for granted getting to experience a child who can fully participate in school events and activities. So many of the end of year activities involve some sort of physical activity-- relays, water fights, bike races etc... And, there wasn't much Ryan could do. Many times he opted out of going to his school's field day. Not that I blame him. In some ways, watching Jorie get to do these things is bittersweet. Ryan never got to do them. But, at the same time, I'm so thrilled that Jorie can do them. :)Here are a few pictures of Jorie's kindergarten graduation. They had the kids line up and sing a few songs, get their diploma's, and then they showed a short slide show (different pictures of the kids from the entire year!) It was alot of fun.