Zane Needs Help To Stay Home With Us
Donation protected
Zane still needs prayer and constant intensive supervision. We are not seeing improvements in his health yet. We do appreciate the prayers that have kept Zane from getting worse! Other needs: Funds for utility bills, food to be brought to us or funds for takeout food, volunteers to hold or entertain Zane or funds to pay someone to hold or entertain Zane.
Diagnoses: Down Syndrome, dystonia, encephalitis, autoimmune disease, involuntary compulsion or tic to punch or bang his head.
MORE DETAILS if you want them....
OUR REALITY His daddy and I (his momma) are hitting an emotional wall of exhaustion and discouragement. We’ve walked this difficult path since May 2018!! At this point we are crawling. I’m crying every day. Daddy can’t really hold him because it strains his back painfully. The bottom line reality here is that Zane is home with us, his parents 24/7 with rare exceptions for special prayer meetings and medical appointments. His medication sometimes helps him sleep 10 hours. Some nights the insomnia keeps him up all night. I even fainted one night at 3:30am in the Kitchen! The other 14-20 hours per day, a person is holding Zane’s wrists to keep him from punching his own head. Yes, you read that right. He started in September 2018 hitting his head on floors, walls, cabinets, etc. When we kept him from banging his head, he immediately punched his head with his fists. We tried arm/elbow braces. They stop the fists well, but then Zane goes to a wall to bang his head on the wall! Of course our current methods stop this from happening. No One knows what he’s going through. The hits seem to be a true compulsion he can’t refuse. Less likely they are tics. He may even be unaware that HE is hitting himself. He reacts as though someone else hit him. His eyes are constantly over dilated so we believe the encephalitis is still tormenting him. He’s probably even feeling headaches. He cannot tell us. Zane is non-verbal.
ZANE’S DAYS
Thankfully Zane is content to rock in a rocking recliner with us all day. He always liked rocking with us. He also really likes to play ring around the rosies or dancing while holding hands. Some days we have had a few hours of help from family and friends. We all like it when they play hard even while holding hands. Zane needs the exercise and mental stimulation. Every second his hands or wrists Must be held by an adult or two.
DYSTONIA: Zane deals with attacks of dystonia 1 time per day on average (previously 8 times per day but Artane medication has helped A LOT!) Some days are much worse. For him this means that suddenly he gets the sensation of a charlie horse in his neck/shoulder muscles. The pain is severe and lasts about 1 minute. We apply pain relief lotion or essential oils sometimes, but we can’t see that anything helps. We just speak softly to him until it passes. These are very emotionally draining to See. I can’t imagine what Zane thinks about them!
OTHER NEEDS
Zane’s daddy has missed A LOT of work over the last few months. When Zane was in the hospital 18 days, his daddy and mommy stayed with him. When we are home, we both have been needed most of every day. This started back in September 2018. We have regular household bills to pay. Any help with these would be appreciated. Zane’s Daddy is trying to go back to work. We need more help at home so he can. We stopped posting the GoFundMe when we were getting respite care help, but those vouchers are all used. We also got enough donations to stay afloat a while. After looking at our current financial situation, I decided I’d post this GoFundMe again. If you can help us, it’s VERY APPRECIATED!! We know we are not entitled to get help, but we know that we would want to know if you had a need we could help relieve. Seriously, if you need Zane’s size 5 clothes he is outgrowing, let me know! I want them to help someone who Needs them. So I’m letting you all know that we also have needs. Please PRAY that a nurse (or 2-3!) will SOON come into our lives to help us. Zane IS APPROVED through Medicaid for 8 hours/day of in-home Nursing. Apparently, there are no LPNs nor RNs in our area that will come here (yet).
THANK YOU for any ways you help us! Love in Christ, Zane’s Family
Diagnoses: Down Syndrome, dystonia, encephalitis, autoimmune disease, involuntary compulsion or tic to punch or bang his head.
MORE DETAILS if you want them....
OUR REALITY His daddy and I (his momma) are hitting an emotional wall of exhaustion and discouragement. We’ve walked this difficult path since May 2018!! At this point we are crawling. I’m crying every day. Daddy can’t really hold him because it strains his back painfully. The bottom line reality here is that Zane is home with us, his parents 24/7 with rare exceptions for special prayer meetings and medical appointments. His medication sometimes helps him sleep 10 hours. Some nights the insomnia keeps him up all night. I even fainted one night at 3:30am in the Kitchen! The other 14-20 hours per day, a person is holding Zane’s wrists to keep him from punching his own head. Yes, you read that right. He started in September 2018 hitting his head on floors, walls, cabinets, etc. When we kept him from banging his head, he immediately punched his head with his fists. We tried arm/elbow braces. They stop the fists well, but then Zane goes to a wall to bang his head on the wall! Of course our current methods stop this from happening. No One knows what he’s going through. The hits seem to be a true compulsion he can’t refuse. Less likely they are tics. He may even be unaware that HE is hitting himself. He reacts as though someone else hit him. His eyes are constantly over dilated so we believe the encephalitis is still tormenting him. He’s probably even feeling headaches. He cannot tell us. Zane is non-verbal.
ZANE’S DAYS
Thankfully Zane is content to rock in a rocking recliner with us all day. He always liked rocking with us. He also really likes to play ring around the rosies or dancing while holding hands. Some days we have had a few hours of help from family and friends. We all like it when they play hard even while holding hands. Zane needs the exercise and mental stimulation. Every second his hands or wrists Must be held by an adult or two.
DYSTONIA: Zane deals with attacks of dystonia 1 time per day on average (previously 8 times per day but Artane medication has helped A LOT!) Some days are much worse. For him this means that suddenly he gets the sensation of a charlie horse in his neck/shoulder muscles. The pain is severe and lasts about 1 minute. We apply pain relief lotion or essential oils sometimes, but we can’t see that anything helps. We just speak softly to him until it passes. These are very emotionally draining to See. I can’t imagine what Zane thinks about them!
OTHER NEEDS
Zane’s daddy has missed A LOT of work over the last few months. When Zane was in the hospital 18 days, his daddy and mommy stayed with him. When we are home, we both have been needed most of every day. This started back in September 2018. We have regular household bills to pay. Any help with these would be appreciated. Zane’s Daddy is trying to go back to work. We need more help at home so he can. We stopped posting the GoFundMe when we were getting respite care help, but those vouchers are all used. We also got enough donations to stay afloat a while. After looking at our current financial situation, I decided I’d post this GoFundMe again. If you can help us, it’s VERY APPRECIATED!! We know we are not entitled to get help, but we know that we would want to know if you had a need we could help relieve. Seriously, if you need Zane’s size 5 clothes he is outgrowing, let me know! I want them to help someone who Needs them. So I’m letting you all know that we also have needs. Please PRAY that a nurse (or 2-3!) will SOON come into our lives to help us. Zane IS APPROVED through Medicaid for 8 hours/day of in-home Nursing. Apparently, there are no LPNs nor RNs in our area that will come here (yet).
THANK YOU for any ways you help us! Love in Christ, Zane’s Family
Organizer
Jeana Spruill White
Organizer
Elk City, OK
