Tabitha

This is sweet Tabitha with one of her big brothers. She is the second child that this family has lost to SMA (Spinal Muscular Atrophy). As I type this post, she is breathing her last breaths on this earth and will soon be united with her big sister, Taleah who passed away in 2004 from the same awful disease. As a mom of a child with the same terminal disease, this hits way too close to home. We have seen our own precious son in grave condition far too many times to count. And each time he is sick, we worry it will be his last. I often find myself asking why? Why do these precious children have to suffer and die? Why do these families have to grieve such a loss? A loss that hopefully most parents will never have to face?? It just seems so unfair. I suppose nothing in this world is fair. We live in a fallen world where children get sick and die. And I just pray that this family feels the love and prayers from people around the world praying for them and their sweet daughter. 

Jorie is TEN!!

Thursday was Jorie's birthday! She is 10!! She has said many times since her birthday that this was the BEST birthday ever. If you know Jorie, you know she is very fond of animals. However, neither Steve or I are really animal people. In fact, other than a few fish, we have not had a pet in our home since Ryan's service dog, Ivy! Jorie has been begging for a pet of her own for so long now. So, we decided she was old enough that she could take care of it herself and surprised her for her birthday with her very own guinea pig! She named her Lauren. She is so sweet. Jorie LOVES her and won't put her down. Just wants to hold her all day. Of course, Josh is enjoying her too and even Ryan likes her. What's nice about her is that she'll just be content to sit in your lap. This is nice for Ryan since he can't reach down to pet a dog or a cat. So, something that sits in his lap is perfect! We enjoyed a nice steak dinner (Jorie's request) and had Grandma and Grandpa over as well as Josh's neighborhood buddies. Jorie had her friend birthday party last summer. So, this was really just family. We do it that way so that all of her friends can attend. When we wait until October, not very many can attend due to illness. This seems to work out better!

Some new earrings and a coloring book from Grandma and Grandpa

Cute stuffed animal from neighbor, Joaquin

Jorie,  Joshua and Joaquin 

New shirt from mom and dad

Another coloring book from mom and dad

Ipod from mom and dad!!!

Best surprise of all? A new guinea pig!

Having dinner with the neighborhood kids :)

Where is my fly swatter when I need it?!

Jorie's birthday was on Thursday and her dinner of choice was steak!!  I thought that was kind of a funny choice for a little girl. But, it was her birthday so we BBQ'd steak! In the process of  BBQing, some very annoying flies entered our home. I thought we were done with flies. But, I suppose a couple of warmer days brings them back out again. They have been hard to get rid of surprisingly. It didn't help that I couldn't find my fly swatter until yesterday! But, yesterday morning Ryan came into the kitchen complaining that the flies were bothering him while he was trying to eat his breakfast! Ryan is unable to swat the flies away making this even more annoying for him. So, I did my best to shoo them away. It reminded me again just how much we take for granted in this life. Just the ability to shoo a bug away!! And how strange it is that Winter means no more flies but it brings with it even more dangerous bugs!! So, while the flies are VERY annoying!! I will take them ANY day over a serious VIRAL bug for Ryan!

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.