Little update on Luke. Still waiting on insurance to find out if the power chair is approved. He's so good at driving it now and we have sent lots of videos of him demonstrating driving through doorways and to the table to get his drink, etc. So prayer that the approval comes through!

Luke has had so much fun at his preschool two days a week. Unfortunately he has been sick about every 3 or 4 weeks and that takes him out of school for a week or two. Its really hard for him to get through these respiratory viruses so we feel like we should take him out for Dec to keep him healthy especially since we will be traveling to PA on Christmas. This kind of stinks since he likes school so much and its really nice for me to have a break, but he should be good to go back in Jan. We are also looking into the possibility that he could be aspirating a little and getting sick from that too. Might need to do another swallow study to see where he's at with that. Luke is only tube fed now. He refuses to eat so we give him formula to provide all his nutrition. 

I haven't done a blog in a while. Just feeling up and down alot. Its strange that I can feel so happy and proud when I see him drive his chair or say something I understand and at times so sad that he isn't able to do more. The thing is he's really happy for the most part and I'm so thankful for that. I just get tired of doing things to my baby that I shouldn't have to, like suction him when he's sick and use the cough assist machine to blow air in his lungs and then suck it out so he can cough. 

God sometimes seems so distant. Sometimes its hard to believe he's doing something good in our difficult situations. Lately when I read the Bible I don't feel a whole lot. But this one scripture keeps staying in my mind, Proverbs 25:2 It is the glory of God to conceal a matter. Kind of frustrating for us, but it comforts me some that its ok that there is so much we don't understand. God plans its that way. He really is being glorified through our hardships.

Someone asked me recently what helps and what doesn't help being the mom of a special needs child. I thought about it and came up with a few things. It made me think about what I say to people that I actually get tired of hearing myself. We say things that aren't bad at all, but maybe there is something better to say. Lots of time I hear people say I'm sorry and I can't imagine what your going through, and I could never deal with what you are. I say that stuff to people lots of times too.  It really isn't bad and sometimes that may be the only thing to say, but when you have a child with special needs you hear that stuff alot. It kind of makes me feel disconnected from people and pitied. We all feel sorry when someone is sick or someones kid never sleeps, or someone is just having a hard time. There isn't a perfect thing to say. But encouraging words are always good. Your not alone. Praying for you. Many times people ask what they can do to help. Its really hard to ask for help and sometimes I don't know what to ask for. I think just staying involved in our lives means the most. Getting us out and doing something normal. Also I've always appreciated a meal when Luke's been in the hospital and a visit from a friend. Recently some girlfriends came over and I was dreading being asked how I was doing with sad faces. But we all just talked about normal things and it was great! Thanks girls! I think parents with special needs kids do want to be asked how they are doing just not with pitying faces. We want to continue to feel some normalcy. I'm so grateful for friends who have stuck by me.

Iron Man

Rapunzel