Wednesday, January 29, 2014





Cousins
Luke has had a lot going on lately. A respiratory infection that has lasted weeks and a fractured femur. We don't know how the fracture happened, but suspect that physical therapy stretching and exercises may have caused it. He has a cool cast and is feeling lots better now. SMA causes low bone density so this is not uncommon, but we were surprised at how fragile his bones are and it was really hard to see him in so much pain. He's doing much better and will get the cast off in a few weeks. Antibiotics are clearing up the respiratory stuff. Prayers that he stays healthy through the rest of winter. Luke won't be going back to preschool this year. Being sick every month isn't worth it right now. He will start Little Light House in the fall.


We had Luke's orthopedic doctor appointment this past week and they took x-rays of his spine to measure the curve. All kids with SMA get scoliosis because the muscles are too weak to support the spine. Even with bracing there is not much you can do to prevent it. This is hard to accept. His spine is already pretty severely curved. Enough that the doctor thinks we will need to start growing rods surgery in the next year to keep the curve from getting worse. The rods will be hooked on the ribs close to the spine. The purpose is to help support his spine and every 6 months they will surgically go in to lengthen the rods as he grows. We will see the doctor again in 6 months and decide when to start.  It was pretty emotional and scary to see the x-ray and already be thinking about this surgery that we thought was years away. Its hard not to worry about.  Hard to imagine a purpose out of my baby having to go through painful surgeries.  I don't know what to say, but that God has been with us through all of this and will be with us as we keep going. I have to remind myself that God loves Luke even more than me and will help us take care of him whatever comes. 

Powerchair was approved! Yea something good! Hopefully will be ordered soon and Luke can show it off. PTL!

We had a really fun Christmas in Pennsylvania and lots of fun snow days so here's some pics.













Luke's really happy. I feel like the luckiest mom to be loved by this sweet boy. He yells mommy when I come home after being out for only a couple hours like I've been gone so long. He's always so happy to see me. Sure I sometimes get tired of being stay at home mom, but there's nothing I'd rather be doing.