Update

Me and Ryan enjoying some sun

Josh working on his homework

The kids before school this morning

We enjoyed a nice weekend at home. Jorie had a soccer game on Saturday. Steve took her this time as I had to stay at home with Ryan. Anything lower than about 60 degrees is just too cold for him. It was so nice that Steve was able to go as he has missed most of her games this season. I will be doing my best to get through this week with healthy kids as my helper (my mom) is out of town for the week! My parents left for Georgia yesterday and are heading home today with a new wheelchair van. They flew there and will be driving the new van home! They will enjoy a nice drive back, stopping by my aunt and uncle's on the way home. My aunt will be happy to see her sister. She struggles with Alzheimers but still knows my mom. It's always a nice break for my uncle as well as he is her primary caregiver.

Just how important a chair can be

Sitting on the couch with Jorie

On the couch, Ryan age 4

Learning to drive (18 months old)

Over the weekend, Ryan's power chair just stopped working. And I mean it STOPPED working. It would not do anything. When we say Ryan's chair broke down, to most people, they think this just means Ryan cannot get from point A to point B until it's fixed. Sadly, this is not so. When Ryan was little, it could be said that his chair's main purpose was to get him around. He didn't need much else other than the support it provided (holding his weak body upright) and to get him around the house or the mall etc.. so we weren't having to carry him or push him in a stroller. When he was smaller, we could just set him on the couch if his chair broke down. Nowadays, things are just a bit different. Sadly, it wasn't until his chair broke down on Saturday that even I realized just how weak my son had become in just one year. Ryan's disease is degenerative. So he will always continue to get weaker. As sad as that is.....it is just part of life with SMA. We got his current chair in December of 2011. So, it's still fairly new to us. But, before that chair he had been driving around another chair since about the age of 10 or so. He usually uses each chair for about 5 years and then moves on to a new one. On Saturday when we placed Ryan in his older chair to be used as backup until his current one was fixed, we soon realized just how weak he had become over the past year. He can no longer drive his previous chair as his left hand has lost so much strength. (the old chair has a different joystick...one that is alot harder for him to control) This meant we had to push him around the house to get where he wanted to go. This also meant he couldn't control the other functions his chair does for him.....recline, tilt, leg elevate, seat elevate etc... When he can't move his body into the proper position, he cannot swallow...yes even his own saliva. So, this meant for most of the day on Saturday, he did not eat much at all. This only added to his frustrations! It also meant he could not get comfortable. Ever since Ryan's spinal fusion in 2005, it changed the way he swallows forever I believe. So, if his head is not in just the right position, he simply cannot swallow. He uses the features on his chair to get him in the correct position for this. And when he can't even control the joystick, this becomes impossible. You can imagine our joy when our wheelchair guy showed up first thing this morning with Ryan's chair all fixed!!! You would have thought it was Christmas over here. I immediately got Ryan out of the old chair and into his new one and the look on  his face was priceless.

Cousin fun!

Enjoying dinner together 

The kids in 2005 

We recently had my niece and nephew stay with us for about a week. The kids had so much fun together. I thought it would be fun to post a picture from several years ago and one from this last visit. Amazing how much they have changed! The kids all get along so well. Even Josh who is so much younger has fun when his cousins come to visit. Just wish they lived a little bit closer!

Just a little update

Jorie with her new retainer!

Josh and Ryan with their spiky hair

I love this time of year! Fall has always been my favorite season. The cooler weather, the beautiful fall colors and the upcoming holidays. Who wouldn't love fall? 

We've been staying busy with all the back to school activities. Jorie is in soccer again this fall. She LOVES it. And Josh is now attending school one more day than he did last year and one extra hour too. Seems really strange to have the whole house to myself for a few hours each day. But, it gives me time for exercise and grocery shopping free of kids. Ryan is doing well in school and is adjusting to having his new nurse with him. I can't believe how quickly time flies. As I pick up Josh from school each day I can't help but think back to when it was Ryan that I was picking up! Hard to believe how fast it really goes.

A special lady

Today those of us in the SMA community and those who knew this woman, Amy, are incredibly saddened. She lost her battle with SMA last night. She was just 41 years young. And while she outlived her prognosis and several of her siblings (that also had the disease).....it doesn't take away the pain of losing such an amazing woman.

I had the opportunity to meet Amy on several occasions when we would go to the SMA conferences. She was at every conference and I can still remember her sitting there at the assistant dog "booth" showing others her special dog. She even gave birth to 2 daughters which is incredible considering most with this disease could never carry a baby much less for 9 months! It truly is a miracle that she was able to due to her twisted body. Effects from years of this horrid disease.

I'm pretty sure I can speak for most families affected by SMA that when we lose one person, we ALL grieve. It's as if we have lost a member of our family. And even if we didn't know her really well, it still hurts to know yet another precious life is lost to this awful disease. It robs people of so, so much. Please keep Amy's family close in your thoughts and prayers. They lost an amazing mother, wife and friend.

Joshie

Water balloon fun!

Playing with cousin Elliott

I really wanted to share a few things Josh has said recently before I forget! We always think we will remember the cute things our kids say and sadly, we usually forget if we don't write them down! So, here are a few of Josh's!

Towards the end of the school year last year, Josh's preschool teacher approached me and shared with me something Josh had said to her. She was very impressed and even got teary eyed as she told it to me. Josh had this conversation with his teacher, Miss Debbie one day.

"Miss Debbie, are you going to heaven?" 
"Yes, Josh, I am going to heaven"
"Is your family going to heaven?"
"Yes, my family is going to heaven."
"I know someone in a wheelchair who's going to heaven....My brother is going to heaven someday"

(I think there might have been more to the conversation....sadly this is all I remember!)

She shared this story with me one day as I was dropping Josh off for class. She said when he was asking her these questions, all the kids had gathered around and it was as if Josh was preaching to the class about heaven. She said it was really cute and that she got teary eyed listening to him. I thought it was so sweet and truly Josh has been listening. We do talk about heaven quite a bit in our home. When you have a child with a terminal illness, it's hard NOT to talk about it. Ryan is not scared about death or dying and neither is Josh! Jorie isn't quite as vocal about it. But, I'm thinking she has a pretty good perspective about it as well.

The other day I was working in the kitchen and Josh said to me...
"Mommy, when I talk to God, He doesn't say anything back"  "I say, God?" 
I tried not to giggle at this. But, explained to him that God speaks to us through the Bible and to our hearts. He seemed to understand as we talked about it again today. I thought that was so sweet.

Pictures in the park

                    Thursday evening, we loaded the kids up in the van; as well as my niece and nephew and headed to a nearby park for pictures! I was thinking back to the last time we had real professional pictures taken of our family. And the last time I can remember, Jorie was a baby! Needless to say, we were way overdue! I had originally wanted this session to be of just the kids. But, the photographer snuck a few pictures in of me and Steve as well. She also photographed the kids with their cousins and I can't wait to see how they all turn out. Here are two pictures from our session. I have to wait a couple weeks before seeing the rest of them. She is so great with kids! We had been going to another place for years (since Josh was a baby) and they recently went out of business. So, we gave this gal a try. She did a great job!