12/23: Feeds started

It is nearly 5 and Emily's feeds have been started. 13 hours without food when the recommended maximum fast time for SMA kids is 4-6 hours. :(

However, Emily seems to be doing well. The affects of the longer than needed fasting time will add difficulty to our home life as we help Emily recover at home. She is happy to have her tube out and she is getting used to the BiPAP again. It is good to have her off the vent b/c weak kids like Emily can become dependent on the vent, so we are so happy that she has been extubated.

Thank you very much, again, for all of your prayers. Blogging is good for me, but my prayer is that my posts are good for you too. I pray that I am providing a window into a real-life situation that is not "doom and gloom" even though the outcome of SMA is not life. I pray that you can find encouragement in the midst of our discouraging moments b/c we do not "blame God" for any of this, but rely on Him for strength and purpose as we deal with a parents worst nightmare, a suffering child.

Thanks for visiting. None of this is over yet, so please visit frequently if you desire. You can even subscribe to the updates by clicking here.

Peace <><

Comments

Shelle Harman (Logan's Mom) said…
I am so glad she is eating and doing ok off the vent.
We (me and Jana) are praying for you guys!!
Anonymous said…
Your family are in our prayers in all season. The Word of God says that the power of the tongue is mighty so we will not only pray life into the family, we will continue to speak life and abundant life. God bless and thank you for being a blessing to others through this blog. God bless.
Nate said…
Thanks so much, Shelle & Jana. I hope Kyle is well!! - I think I've missed some updates on him, if there have been any.

Thank you also, anonymous. "We are confident that as you share in our sufferings, you will also share in the comfort God gives us." (2 Cor 1:7)
Dawn said…
I am glad that Emily is doing better. I already had the articles that you sent to me but I appreciate your thinking of us!
I know how frustrating it can be dealing with "overconfident" doctors! We spent a night in the ER dealing with them until Aiden got his transfer to children's!

Dawn and Scotty Bundy
Anonymous said…
God Bless you and your family. Our family will keep you in our prayers. I just just read the article "Hope is her middle name," and found this blog. I have 2 children of the same age. Your story and especially the picture of your family attending church made me realize the importance of everyday blessings. Thank you for sharing your story.
Bug said…
So glad to hear she is on feeds!!! And doing so good, sorry you all had to go through all of this, know our prayer s and thoughts are with eaxh and everyone of you!!! Get that little one home soon!!!! Hugs and Loves Shiela
Princess Courtney said…
We are praying for little Emily that she will get well soon. Thank you for the Secret Santa gifts, we received them on Saturday. We will send pic's when the girls open them on Christmas. The article was wonderful. Wishing you all a very Merry Christmas! Linda Rosas
Scott said…
I am glad to hear that Emily is doing well without the vent.

Your faith is refreshing in a world that gives God such short shrift and tends to blame him when everything goes wrong but never offers praise and thanksgiving when wonderful things happen.
Anonymous said…
Nathan, in the middle of your difficulties you continue to encourage the faith of all of us. Thank you. We continue to pray for your family. Have a blessed Christmas.

Illa
Tina said…
Merry Christmas to you all! I will keep praying that Emily continues to improve. Hope you are able to have a joyous holiday!
:-)
Anonymous said…
I'll be praying for you guys and for a speedy recovery for Emily. Your patience with this is amazing - I know how frustrating it is when doctors won't do the things you know are best. Your point about remembering the Lord is really in control is right on.
Bettylou Ross
Julie said…
Merry Christmas! I used to believe in the saying "God doesn't give us more than we can handle", but have come to realize God does give us more than we can handle so we are dependent on Him. You are a testament to that. Thank you for sharing your life with us. I have been praying for Emily and your family for over a year. With Love and Blessings, Julie Goyette