Nashi continues to make strides in her recovery from her recent bout with pneumonia.
Since I last wrote, Nashi continueds to get stronger each and every day.
She recently had pneumonia; therapists/nurses have been working with her, giving her breathing treatments, making sure she gets her medications, et. al. She's been on oxygen since her last hospital stay; doctors think she may be off of it within the month, which would be an answer to prayer.
Nashi is laughing more in her silent way, becoming more animated in her expressions, letting us know what's on her mind. She has a systematic way of communicating with us: one blink means yes, two blinks mean no, a wide smile means she's happy, a frown or a grimace means she's mad or unhappy about something. If she's not sure, she'll make a mixture of her happy or sad/mad faces.
Sometimes she'll grunt or groan, or chatter her teeth to add tone to her pronouncements. Either method she uses, it's an effective way for her to communicate, and we know just exactly what's on her mind.
Nashi will never get any better (if anything, she'll probably get worse and eventually die). We try not to dwell too much on that. We want to enjoy her just as she is, as long as she's here in our lives. That's the most important thing to us now. As long as she's happy or well, then we're happy for her.
In a few weeks, we're taking our trip to Disneyworld during Easter break. The kids know something is up (even Nashi knows); however, we are trying our best to keep it hidden until the day we leave for the airport. It's hard, though; we're excited too. This is the first real vacation we've really had since last Thanksgiving, when we went to Tennessee to see my husband's brother and his family.
Because of the fragile state of our daughter's health, we don't take very many vacations. So much can happen unexpectedly; there's no telling when Nashi will end up in the hospital again. That's what makes her having Canavan disease so maddening because it's so unpredicatable.
When we go anywhere, we have to have one of her regular nurses come with us so she can help her if something comes up. If she gets sick to where she needs hospital care, then we call for an ambulance, and the ambulance takes her to the hospital, where she can get the medical care we're not capable of doing.
Oh, we can clean out her tube, change it, or connect the nutrition pump to it and feed her every four hours (as well as dispense her meds) or help her during a seizure, or dress her or change her diapers, make her comfortable.
However, some of the medical stuff is way beyond our capabilities, so this is why we have a nurse come over, to help her.
To give us a break, as it were.
It also gives us more time with Hyman, our other child, and enjoy the benefits of having a healthy child. That way, Hyman doesn't feel left out because we are so wrapped up with Nashi.
Besides Nashi's health issues, when we go on vacation, we have to find a place that's wheelchair-accessible. Our daughter cannot walk; when out and about, she requires a specially made wheelchair, since she is unable to sit up by herself. She's so weak she can't even hold her head up without help. Straps hold her in place, we don't have to worry so much about her falling out.
That would probably be one of our worst fears besides her having seizures, choking on fluids in her lungs, or ending up with pneumonia.
Again.
The worst fear of all we have is finding her in her bed--dead or unconscious, her heart and/or breathing stopped. Our worst nightmare.
Well, I have to go now: time to hook up Nashi's "lunch"; it's almost feedin' time at the zoo. Hyman is also whining that he's hungry; have to fix him a sandwich and some tomato juice for lunch, as well as an apple. Time I fix something for Tovah and myself as well; we're getting hungry as well. I will write in here again; hopefully Nashi'll continue to do well!
Karen I have often said it takes a very special person to accept the responsibilities to not only care but to fully love a child who is in constant need of special needs and care. Thank you for letting others know what is involved.
Newfie Hugs are on the way, Rose
Everybody suppose that disable children, even those with severe cerebral parese can't understand or feel the veriety of feelings that we do have.
Wrong! only God knows and we can't second guess Him.
Nashi's happines at the prospect of a Disney trip should be accepted as we accept it from a healthy child.
Body language shows Nashi's capabilities of communication. DisneyWorld awaits! Spring outing and wheelchair tires pumped...thanks for the story today, Karen Lynn...
Karen.how you keep your characters with such totally different identities and attitudes etc is a mystery to me! you are truly an awesome storyteller. I'd love to see a list of your characters for all your writes it has to be enormous!Kudo's to you dear friend!
It must be awful, having a child so severely handicapped, your life revolving totally around them - at the risk of ignoring? Abandoning? Other children who need a parent's love and attention - still, this family includes her in all activities, taking into account her special needs - some are much stronger than I could ever be - very acutely penned.
Re-Release! No longer back-listed. Return to the Olde Ways. The hustle and bustle of modern day life has brought many of us to a quick fix attitude.This book is for those of you who are fed up; have looked at your life and your loved ones and realize
Since I last wrote, Nashi continueds to get stronger each and every day.
