Mixed in with the hard, there have been really hopeful things too.
So here’s the hope…
We increased the dose of little boy’s Neurontin to help buffer his pain. He was really dopey on the first day of the higher dose, but his body seems to have acclimated somewhat, and although he is in slow motion, he’s not in as much pain. Also, I love that it’s not an opiate. It’s a neurological drug which also may prove to be diagnostic in someway.
We went to Mac’s Christmas program Tuesday night and Nathan came along this year. This was his first time joining us. He loves music and therefore he loved the program. It made my heart happy to be together as a family listening to songs about our coming King. Mac was so proud on stage and especially pleased to have a Peppermint Shake from Chick Fil-A afterwards. He’s come a long way since the Lovie Bear and the Christmas Program.
Nathan was in the ER this week, HOWEVER it was actually for a treatable condition. [Gasp!] On Tuesday he stopped wanting to use his left leg and would wince every time we touched him. Turns out he had an abscess on his thigh that needed to be drained and treated with IV antibiotics. My husband is a saint for taking him and waiting there till after 2:00 am. We have a division of labor in the family. I do doctor and therapy appointments. He does ER visits.
Finally, I was able to book an appointment for Nathan with a doctor that I’m hoping will give us some further insight into the mysteries of his bladder and kidneys. That appointment is on Monday in Houston at Texas Children’s. Please pray if you think of us.
This morning during my advent devotional I came across a portion of scripture in James Chapter five that I never noticed before. It says to wait patiently and steadfastly. This is encouraging to me because I have to choose to be steadfast in finding the right care for Nathan. And this is easier to do when I acknowledge the hope I have in Christ. The hope of Christ coming outweighs anything on my little list. I think this is a lesson for me not just in this Christmas season but in this season of life.
Be patient, therefore, brothers, until the coming of the Lord. See how the farmer waits for the precious fruit of the earth, being patient about it, until it receives the early and the late rains. You also, be patient. Establish your hearts, for the coming of the Lord is at hand…Behold, we consider those blessed who remained steadfast. You have heard of the steadfastness of Job, and you have seen the purpose of the Lord, how the Lord is compassionate and merciful.” – James 5:7-11
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!