Here is mine and Tinas typical week day. up at 4am to get ready for the day. at 430 we start getting the boys clothes, toothbrushes, medications ready. 445 we start the boys range of motion exercises while they sleep along with massaging out their muscles to keep circulation good and help prevent painful cramping in their muscles. 515 we get them dressed, they do not have the muscles to even roll over when changing them. after we undress them, remove their diapers(yes they need diapers because the muscles that control those areas are even week) they get sponge baths. Then they get dressed, meds and teeth brushed. Usually with a heavy dose of attitude because they dont want to get out of bed. 530 we have to lift them into their wheelchairs, no hoyer lift or machine assistance, we physically lift them. Considering Peter weighs as much as Tina, you can imagine the number it is doing on her back(granted in the morning I am usually home and do the lifts but at night I am at work). Why dont we have a lift machine? Because we do not have the room to use it in the house. once they are in their chairs they get their hair brushed and get to relax for 30 minutes till the bus come if all goes well. once they are on the bus Tina leaves work. If I am on days at the school then I am out the door before they leave. When Tina gets home from work, the boys are home and asking for stuff the minute she walks in. They need help with everything(best way to help you understand is picture 2 giant newborns that need everything done for them) Even having to do all this, we still try to let the boys do as much stuff as a normal kid regardless of the fact that we dont get sleep because the boys need to be adjusted in their beds at night or have diapers changed. This doesnt even take into account the numerous doctors they see multiple times a years, therapy sessions, medical equipment fittings and extra school meetings. Now ask me why tina and I dont just get second jobs to help cover the cost of a Home addition so make the house accessible for the boys? If you really need me to answer then please defriend me now because you will not like my answer. This may sound hard or like a pity party but Tina and I have done nothing but try and help others while we thought certain people might actually see how we struggle and offer to help. Thank you to our friends that have helped and offered support but their are some that should have stepped up and helped and have done nothing but turned away so they dont have to feel bad for not wanting to help. At this point we have decided to cut them out and if they bump into us on the street and ask how we are or the kids are, we will not even answer them. We no longer have the strength to tolerate them.
Posted on: Sun, 03 Aug 2014 13:45:07 +0000
Trending Topics
Recently Viewed Topics
© 2015