Exhausted.....

Last week we found out that our insurance will only pay for a power wheelchair or a manual but not both. The crappy thing about that is that he cannot get a power wheelchair until he is two. So we will have to pay for a manual wheelchair in order for him the have the independence and mobility he needs and craves. We would definitely rather pay for the $4000.00 manual wheelchair then the $30,000 power one. YIKES!

Another SMA mom suggested that I look into our states Early Intervention program for services. They provide services such as physical therapy for developmentally delayed and disabled children under 3. We will be meeting with them on the 15th for an evaluation of what Noah needs, and then they provide the services in our home. Thank you Lindsay!!!

I hate SMA.....It has completely taken over our lives....

Since we got Noah home we have had issues getting him his full amount of feeding through the night. He gets too full and wakes up gagging or throwing up. So, on top of all of our other issues he is sleeping worse than a newborn. Needless to say Lane and I have been running on about 3 hours of sleep each night.

I know we have both been questioning our faith. It's so hard to believe when it seems like nothing seems to be getting better....I don't expect it to be a walk in the park, but I thought the things we are doing to help him would make it easier. It seems that each day and night continues to be more of a struggle. It puts a huge cloud of hopelessness and anger above me. I hate feeling so helpless. I hate feeling so negative about everything...We really need a break....At least to just catch our breath.

It's bad enough seeing your child struggle. Then to know that their life will be cut short because of a terminal disease. We want the best for him and it hurts to know that giving him the best we can will never be what we actually want to give...it will never be enough.We want to give him strength....we want to be able to cheer him on as he plays baseball, football and all the normal things kids do that so people many take for granted. Knowing that he will never have that opportunity is heartbreaking to say the least. There are no words to describe the feelings that SMA has brought in our lives.

We are SO tired..........