It's been awhile since I've updated....
Easton has been fairly healthy through the Holiday's up until now... He had a great Christmas & he continues to remind us of the important things in life.
Unfortunately, the last couple weeks he's been having some nerve pain off & on, but its been extremely bad the last couple of days. This usually happens when the weather changes, and Winter is here! He's only sleeping about 4 hours at night, because he's so uncomfortable. As a mother, we want to fix & make things better... It's so difficult feeling so helpless. He's getting some pain medicine & even some valium to help with his anxiety & to help calm him & it's still not improving much. I called his neurologist in St. Louis and we are slowly increasing his neurontin for his nerve pain over the next few weeks & hoping that will help. We are also scheduling another scan. It's so difficult to know what is tumor related & what is being effected by the weather & pressure changes. Although I do notice he has increased nerve pain in the Winter, than in the warmer months. So hopefully that's all it is.
He's also having some emotional issues.... I know he's becoming more aware of what his limitations are, and he's starting to question his disabilities and this disease. Not an easy conversation to have. It's really taken a toll on all of us, because as his parents we see him as our little miracle & love him just the way he is! Although, he's trying to process growing up on top of growing up with cancer. I still have to assist him in many daily routines & I think he feels bad that we have to give him so much attention. Of course we don't think twice about it, but he feels like he can't be independent & when he tries he gets frustrated because he's unable to. It's gut wrenching at times.... On top of lack of sleep! This is such an emotional roller coaster that I wouldn't wish on anyone. Some days we get a sense of normalcy & others I feel like I'm in a bad dream.... how could this be our life? Why is my child going through this? I know that's when my faith comes in. And I'm guilty at times that I don't always Thank God for the good & bad times.... I need to lean on Him, but inside I just want my son healthy. I know God has a plan for Easton & that he's watched over him every step of the way. And I know he will continue to guide us through this journey.
There are so many unknowns right now & I think that makes us all a little anxious.... Obviously Easton hasn't been at school since before Christmas break, so that's a concern. Although his health will always come first. We are trying to get him some assistance as far as disability goes... It's not an easy process, which I feel like it should be considering his diagnosis, but apparently our governemnt says differntly. It's just making it almost impossible for me to work when Easton gets sick. And he's my main priority. His emotional well being concerns me, and we've been seeking counseling for him. I know we have an excellent team to care for him & most all some awesome prayer warriors! So if you could please continue to pray for Easton, your prayers are mighty & appreciated! This has been really draining on all of us and we pray for God's will, and for Easton to be healed.