Very hard day, nothing calming him down. Went to school but came home very sad, crying, and with a temp. Nurse came to check on him. Temp of 101. The new meds prescribed are not working to bring him comfort. Our neurologist, family doctor, and the doctor who works with
CompassionNet have all talked today and it looks like we are going to try a new course of meds. Pray this works. David is also struggling eating and drinking. It looks like we are going to have to make a decision regarding a g-tube. Very hard decision.
On one hand I am sorry this is always bad news, but it is the only news we have to share with you right now. Thanks as always for your prayers.
Some of you are still wondering what you can do to help. How about sending David a funny card and just thinking of you. Here is his address:
David Pfohl
4440 Brickyard Falls Rd.
Manlius, NY 13104
You are always on our hearts, hugs and love, Deb & Ted
ReplyDeletehere with David in his room, he lies on his back, feet crossed at the ankles with a "wedge" to help him sit up - it seems to be the most comfey position for him. He rubbs his hands together and softly "cries" without tears, when he is not smiling or laughing about his hickups or the fake fart noises i make (yes i am a child but hey it works!) It seems he is not feeling pain but enjoyes havign his tummy rubbed. He is hot and a little sweaty on his brow so i whipe him with a wet washcloth...it is important that i explane what i am about to do even though it seems like he can not understand me. when i don't give him that heads up he says very sternly "Stop IT," but when he does that if i tell him that i am helping him he almost always settles down. i put the masage oil between his hands because i was afraid he actually was going to lite a fire with how much he rubbed them together. Becky Robinson and i joked with him earlier today that he was going to rub his fingerprints off so he could be the safe cracker in our gang when we rob a bank...he laughed at that one!
ReplyDeleteThanks for lettign me share
Laura
I'll be praying for you David. I hope I get to see you at school some more:)
ReplyDelete~Kristen Marshall
Thank you for sharing your story with us and allowing us a glimpse of what is going on daily. We welcome the opportunity to pray for you and to share Gods love. So keep doing what you're doing. God Bless.
ReplyDeleteChristina