Sunday 25 November 2018

Need advise on how to care for paralyzed son


In October this year, my son was diagnosed with Acute Flaccid Myelitis, or AFM. It is considered a very rare but disbilitating diesease that can affect arms, legs and in more serious cases, upper body. He has recovered much of his strength in his upper body and arms, but his legs are extremely weak. He cannot stand or move them. He went from an active and healthy 3 year old to being unable to walk, stand, lift his arms or sit up in a matter of days. We are currently doing inpatient PT and OT. We've lived here for a little over a month now.It is like having to care for a newborn all over again. He has to wear diapers or be carried to the restroom. Bathing is a two person challenge and this is with a tub that can raise and has all kind of options that you would expect from a children's hospital. We are extremely stressed about what we are going to do at home once we are discharged for outpatient PT and OT. We are living with my MIL and her house was built in the 1920's. Meaning it is about as disabled unfriendly as can be. Stairs in both front and back enterances, narrow doorways and hallways, high counters and a diifcult to get into bathtub. Wife will have to quit working to care for him. We don't even know where to start with trying to make the house more accessible to him. We figure there has to be devices and things that would make things easier for everyone (using the bathroom, bathing etc.), but don't know where to even start.We are hoping for recovery in his legs, but the reality is that could take months or years. For now, we have to do the best we can to provide him the best quality of life possible. I would love to hear about any good resources and advice from parents who also are going though the same challenges. I know there is Google, but there is so much information out there and between work and going to the hospital to be with my wife and take care of my son, I would appreciate any advise.Thank you in advance. via /r/Parenting https://ift.tt/2R81JCK

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