As time passes on....So quickly

Last week Primary Children's called because they had a cancellation. So we were able to get Noah in three weeks sooner to get his legs casted for his AFO's. (AFO's are Ankle Foot Orthotics which provide the support he needs due to his muscle weakness). We will be picking them up on the 27th. That day we will also be meeting a vendor and getting him fitted for a stander which he badly needs.

Last Friday, Lane and I got the call from the genetic counselor to inform us that we are both for sure carriers of SMA. We will be having an amniocentesis done on January 30th at 17 weeks.

Noah has had some nasty granulation tissue forming around his G-tube (different spot than last time). On Monday, Lane and I took him to Dr. Scaife (surgeon). He gave us a steroid cream and said that if it didn't help that the tissue would need to be surgically removed. Not good.....So please say a prayer for that....

Each day brings new struggles for Lane, Noah and I. Trying to deal with this disease is the hardest thing we have ever done. Each day passes by at lightning speeds and I feel as though it is in fast forward constantly. I am running to keep up but falling behind....it is unimaginably hard. I feel as though life is dragging me by my feet... With Christmas approaching it is different this year. I can't seem to get in the spirit. We still have yet to put our tree up....(but with that said we just moved last weekend so I get a little break...right?) It is also hard to see that each day it seems that another child has lost their battle with SMA. These winter months are so hard on them. It is a constant reminder that we have no idea how many Christmas' we will get with our beautiful little boy. It brings about the fear of the unknown. We are so excited that he is now consistently gaining weight, but the weight gain brings more struggles for Noah. It wears on his already weak and frail muscles. He has that much more weight that he has to maneuver. It is very apparent as it seems he struggles more and more to drag his body around and has also started tipping over move often when in a sitting position. It is truly heartbreaking.....

But life goes on anyway....83 days have passed..