:(

Ryan has done so well over the past few months! In fact, we all have. We had a horrific fall with Swine Flu sweeping through our entire family one by one. I thought it would never end! Ryan is sick once again. And it started out with a pretty decent fever this morning of 101.3. I'm not happy about this at all. His 14th birthday is coming up in less than a week and it will break my heart if he has to be sick on his birthday! Hopefully, this ends up being nothing more than a mild cold and he is well in less than a week. We will see what the next few days bring. Ryan may end up getting 2 weeks of spring break! Please keep my boy in your prayers. I never know which direction an illness will go for Ryan. He could be in the hospital fighting for each breath in a matter of days, or he could fight this illness at home with us stepping up his treatments!

Ryan's friend, James

Ryan had his friend, James, over on Saturday. The two enjoyed video games and chatting about school for most of the afternoon and into the evening. And as is tradition, whenever James comes over, we always have pizza for dinner! It has been quite a while since I have seen James and I was shocked when he walked in the front door. He is nearly 6 feet tall now and just towers over all of our family! I know I have said it alot recently about how shocked I am that I have an almost 14 yr old boy! But, I think it's more "real" to me when I see his peers. They are growing so tall and I can really see through them just how old my boy is getting. It's much harder to see how much Ryan is growing as he's sitting all the time and with his spinal fusion, his torso will never grow anymore. And, although, Ryan is definitely growing...he is still somewhat small for his age. And I had to snap a picture of my foot next to James' shoes. Although, I do have small feet; the comparison was pretty funny.

PS....

This is NOT typical behavior for Joshua. He really is a nice child and caring towards his brother. But, he was throwing a tantrum and Ryan happened to be in his path!

Helpless

Being completely helpless ,or in this case defenseless, is NOT a good thing when your 2 yr old brother throws a temper tantrum while mom is in another room and decides to take it out on his 13 year old big brother just because he knows he can!!! Joshua decided to take out his frustration on big brother's face. This is one of many things that are TERRIBLE about SMA. Ryan was completely helpless in not only could he not push his brother OFF of him... But, he also couldn't yell loud enough for me to run in and rescue him. Joshua had a LONG talking to and was punished for his actions! But, poor Ryan still has these scratches on his tender face. :( It reminds me of a time when Ryan was only about 3 yrs old. Our van was parked in my parent's driveway and I left him for a couple of minutes in the van while I ran into my parent's house to grab some of his things. When I returned he was crying hysterically because a bee had landed in the car near him and he was completely helpless to do anything about it. He couldn't even swat it away! I felt so terrible. I had to hold him and comfort him for several minutes afterward. Oh the joys of SMA.

My first boy

Looks like maybe Ryan had us all fooled. He seems fine today. So, I am going to relax a little!

I have been thinking alot lately about how having my first child with such a handicap has affected my way of parenting. My first experiences as a mother were filled with hospitalizations,fear, sadness, stress, heartache and disappointment. I often wonder how different my perspective would be if Ryan had come 2nd or 3rd in our family. Would I have had a more balanced view? Would I not be SO extremely careful with my other two kids, worrying about every little germ or every little milestone they reached or didn't reach quite on time?? On the other hand, maybe I wouldn't have appreciated all the things they are able to do quite as much if I hadn't had Ryan first. I find myself thanking God for even the smallest of accomplishments. Whether it is the ability to dress themselves, brush their own teeth, get in and out of the bathtub on their own, or even the ability to help me out with laundry or cleaning! Steve and I sometimes joke that we currently have 2 boys that wear diapers and won't it be nice when we only have 1 that still requires a diaper at night? Of course, Ryan is potty trained. But, since he is unable to get up at night, he still requires the use of a diaper. In addition, he is fed through his Gtube at night making his tummy and bladder that much more full! I often wonder why God allowed this special child into our lives and I still struggle with this disease; SMA. It's painful to see your child miss out on so much, to see his peers shy away from him at school unsure of how to relate to him, or just how much physical pain he has had to endure. I sometimes want to pinch myself and wake up from the nightmare that is SMA. But, I know that God works ALL things together for good. And I know He has a purpose for Ryan's life. Meanwhile, I will cherish everyday we have with our special boy and being that much more thankful for every little thing my other two kids are able to do!

Might be sick again?!?

Well, here we are again. I am not sure what is going on with Ryan. But, I sure hope it's not a respiratory bug. It sure seems that way to me. His o2 sats are low tonight and his heart rate is a bit elevated. He also has increased secretions which is usually a sign that he is getting sick. Please keep my boy in your prayers.

Outdoor fun

In between games of Monopoly and Sorry, this is what Ryan spent alot of his time doing yesterday. Burning sticks and dried up leaves with a magnifying glass. I am thrilled that this is an activity that he CAN do as so much of our outdoor activities, he is unable to participate in with us. In addition, the weather has been a little too cold for him to be outside for very long. However, yesterday we had a few sunny spells where Ryan was able to be outside for a little while. I find myself thankful for even the smallest things after having a child with such a handicap. There is so much Ryan cannot do. Last week, I think Ryan did have a small bug of some sort. Some sort of tummy bug that made him just feel "off" and not much of an appetite. Thankfully, it never amounted to much of anything other than 2 days of missed school. But, he did lose some strength in his arms during this time. This is not at all uncommon with SMA kiddos and especially during an illness. They can lose strength in a matter of days due to illness and sometimes, it never returns. When Ryan woke up the 3rd morning and still said he could barely move his arms at all, it began to worry me a little. However, by the 4th and 5th day, he had gained the strength back in his arms. I am so thankful for each and every movement that Ryan has and each and every activity that he can do independantly!