Good day today....

Lane was able to be off work yesterday and hang out with our Noah. I was thankful for that because Lane needed the break....

Today I had been coordinating with Abby, Dr. Swoboda's nurse trying to make things work out so that it would be less hectic and more beneficial to Noah. She was able to coordinate his EMG to be done while he is sedated in the OR Friday, this way he won't have to be sedated a second time. Then we will meet with them after his surgery. I am anxious, scared, excited and nervous.

Today, Lane took him to have his swallow study. He said they gave Noah chocolate pudding which he thoroughly enjoyed. I was shocked when Lane told me he passed. We originally were thinking he may be silently aspirating but thankfully this is not the case. After the swallow study was done they went to meet Donata, the PT.

Lane thinks the world of her already, he said she was excellent with Noah. After evaluating Noah she said that she was very impressed. She said that he has a lot more strength than she expected. He did show some weakness in his hips but his range of motion, leg strength, and arm strength was really good. Thankfully he is still able to roll over, go from crawling to sitting position, and has decent balance.

I thank God for some good news.....I have had so many emotions run through me all at the same time. All I want is for Noah to have a fulfilling life. I am excited....but at the exact same time I am heartbroken.

We received an information packet from Families of SMA yesterday. I spent an hour or so looking at all of the information. It was a ton of stuff that was very helpful, but while reading everything and looking at all the pictures of these amazing kids it shredded my heart a little more. It hurts me to think of all the precious, beautiful children and their families that are dealing with this.

I never thought anything like this would happen, but who ever expects something devastating to happen to them? It is so overwhelming. Sometimes I feel like I can't breathe......

Noah is the one keeping us strong. He is a go getter and not willing to give up. I pray for his strength, I pray that he will continue to get good reports, I pray that God will lay his hand upon him and touch him, and most of all I pray for his future.