Aunt Karen

Our family took a great loss last week. We lost my mom's baby sister, Aunt Karen. She was a young 59 years old and had been battling Alzheimer's disease since her early 40's. Hard to imagine Alzheimers affecting someone so young. It's an ugly disease. We have spent the last 10 years slowly seeing her decline. Eventually, she lost the ability to walk and talk and in the last two weeks; she could no longer eat. I never knew how cruel of a disease this was until it happened in our family. I thought it was a disease that elderly people got. I never realized the magnitude of the effects it had on someone until it happened to my aunt. We are heart broken at the loss of my aunt. But we know she is in heaven with our Lord. She is free from pain and disease and she is happy. We will always miss her. But we have been missing her (the real her) for years now. I have so many people I can't wait to see again in heaven! 

Christmas break

Just a few pictures from the last week. Ryan's best friend, Sam, came for a visit. The boys had such a great time together, as they always do! My sister and her husband were also in town along with their boys William and Luke. Poor Jorie is so outnumbered! So funny how when I was growing up, it was all girls! Now it's all boys! :-)

A new year!

What a way to end the year! December of 2013 will probably be remembered as one of the hardest months we have ever had. Ryan is doing better all the time. He is starting to adjust to his new diet. He still isn't thrilled about it. But he's more accepting of it than he was at first. He is battling a urinary tract infection currently as well as a bacteria called pseudomonas. These bacteria are difficult to get rid of and he's on a heavy duty antibiotic to kick them quick! He's battled metabolic acidosis, dehydration, severe weakness, nausea and vomiting, low blood pressure, 2 PICC lines, a yeast infection, vasal vagal attacks, fever and now a UTI and pseudomonas.  Poor kid! His best friend is here visiting this week and has helped boost his spirits a bit. Thank The Lord for good friends AND family!! Where would we be without them! 

Great Grandpa

We were able to enjoy a visit on Christmas Day with Steve's grandpa; Grandpa Prisk. He showed us pictures from world war 2 and even gave Joshua a badge that he wore on his uniform. Pretty cool! 

Hard month

This has been a hard month. Plain and simple. I am actually looking forward to January this year. 

Ryan is home and is starting to make a physical recovery. But I'm afraid emotionally he's not doing so well. I have never seen him this down. In all his 17 years he has never been quite this sad. It makes me so sad to see him this way. With everything he has had to live without or lose over the years. This has got to be one of the hardest to bear. Because of how sick he got we had to make some MAJOR changes in his diet. Kids with SMA follow a very strict diet. They are basically vegetarians. In addition; dairy products are also a no no. Of course two of Ryan's favorite foods happen to be meat and cheese! We knew about this diet before. But we thought Ryan perhaps didn't need to follow it as closely as some kids do. We were wrong! With 2 hospitalizations in 3 weeks time I think it was enough to wake us up. Why is he now affected so much by what he eats? We aren't sure. Maybe he always was and we just didn't recognize it? Maybe his body is changing and his needs are changing? 

I am praying that he is able to see that the end result will be worth giving up the foods that he loves. Right now he's just discouraged. :-( 

So thankful

My sweet boy is home! This is the best Christmas present any of us could ask for of course!!!! It was 3 weeks ago that we thought we might lose him! And he's here and doing well today after 2 hospitalizations! We are so grateful for his life! We are making some major changes in how we care for him. This all fell on one of the busiest times of the year. But we are determined to keep him out of the hospital and in the best health possible. So it's worth all the work!! Merry Christmas from our family to yours!!

Sick again

So for those that don't know Ryan is back in the hospital. This time for the stomach virus. 2 weeks ago when he went in it was for issues that are related to his disease. This time it's just a tummy bug. But he hasn't even gained his strength back from the last illness! It doesn't take long for SMA kids to be in real danger. Saturday evening we were sitting in church and by later that evening Ryan was in the hospital. It happens that fast! Please pray for our family. I'm worried about Ryan. But also my other 2 kids who don't get as much attention as they deserve when their brother needs so much of us. :(