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. :( 

Fun night with our girl

Jorie had her Christmas program at school last night. She played the part of a lion in case you are wondering why her face is painted. It was cute! Since there is a flu bug circulating through Josh's classroom and since Ryan just got out of the hospital; we opted to keep Josh home from school this week. He's getting an extra long Christmas vacation!! 

It's almost Christmas!

It's beginning to look alot like Christmas around here. With Ryan's latest hospitalization; I felt so unprepared for Christmas. I feel like this weekend I finally feel in the spirit of Christmas and a little more prepared too! Ryan's care right now is constant. I can't be away from him for more than a few minutes before he calls me in to help him in some way. He needs help moving his arms into position so that he can control his chair, he needs constant hand warmers, heating pads or hot water bottles applied to keep his hands able to move and his feet from turning into ice cubes. He needs help taking drinks from a cup, and lots of coughing and suctioning as he's so weak. I am really hoping in time this will pass. But there have been kids who after an illness; never get it back.  We enjoyed lots of family time this weekend. Just taking it easy and enjoying the tree and decorations. :-)

Update on Ryan

So I wanted to post an update on Ryan. He went into the hospital with severe dehydration last Friday morning. The doctors say we nearly lost him. He was in what is called metabolic acidosis and was basically comatose for 24 hours upon admission to the hospital. It was a very scary time. He was in the ICU for a few days and then moved to the peds floor. He is home now but is extremely weak. So weak in fact that he struggles just to move his hands half an inch, swallow his saliva or even play a video game. This has been an incredibly difficult time for our family. But we have made it through tough times before. I am so proud of my son for all that he has been through and still mostly has a smile on his face.