I had tears last night as I watched Ruby seize. She had been up for hours, then she threw up and we found her in bed covered in it. Then, we got her cleaned up and she was finally settling down when she started seizing. This was a seizure where she cramped up and then cried through it like she was scared or maybe in pain. There I sat by her side, helpless. All I could do was hold her and tell her how sorry I was that she had to go through this.
We have been experimenting with the feeding pump all weekend. Last night we gave her her evening feed and her morning feed slowly through the night. I thought this would help her tolerate it but apparently that wasn't the case. We will keep experimenting; I often wish she came with a manual.
My heart is heavy this morning. Our reality with Ruby hits hard sometimes.
"Hear my cry for help, my King and my God, for to you I pray. In the morning, Lord, you hear my voice; in the morning I lay my requests before you and wait expectantly." Ps. 5 :2-3
5 comments:
Oh, how disappointing!
Isaiah 41:10b
"I will strengthen you and help you. I will hold you up with my victorious right hand."
Praying you feel God's strength and help.
So, so sorry, Kelly. It is unbelievably hard to watch your child suffer. We found feeding "freedom" for Marissa when we switched to continuous J-feeds. She now only gets a few medications via her G-tube, but everything else via her J-tube. She is much more comfortable. Praying for Ruby.
I'm so sorry to hear that Ruby is struggling again, Kelly. The emotions as a mom must be so hard. Praying for strength for you and Mark for each day.
Praying for you and for Ruby as you continue learning and re-discovering what she needs.
I am thankful for the encouragement you are getting through friends and family. It is complicated - all of this. Wishing you strength. spot
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