Monday, January 16, 2017

The Epitome of Special Needs

A lot has changed in the last two years.  Lizzy has changed.  After our Disney trip when her hip went (or was for a long time) bad, she became a different Lizzy.  I feel like we, as a family, became more handicapped by her.  We couldn't take her places like we could before.  Now, I wish she had gone everywhere with us because I see now how "easy" she really was.

She doesn't seem as happy as she was.  She doesn't sleep as well as she did.  She is on more medicine. She is heavier.  Harder to move. I'm exhausted from changing her diaper.  If this is even possible, she requires MORE attention than before.

You know when you realize when someone is really smart you say "wow, he is really intelligent!" or "dang, she is really fit!" We found out just how disabled Lizzy was a couple days after Christmas.

Lizzy is able to pick up toys and put them back down.  Sometimes she throws her toys and sometimes she collects them in her lap. So she can have a pile of three or four toys in her lap.  We also find that she crawls over her toys and may sit on them.  My point is she has the mental capacity to pick and choose which toys she wasn't to play with by reaching or crawling to them.  We have a space heater for her room.  Her wing is approximately 1,000 square feet and we have the capability of heating/cooling all or some of that.  We have a mobile thermostat and if she is playing in the gym, we take the thermostat in there.  Wherever the thermostat is, it reads the temperature in that room and heats or cools to desired temperature. So we have a little space heater that was on her floor a couple days after Christmas.  We have had several over the years and we have never had an issue with it.  Until now.  I heard her in her room that morning.  She sounded a little fussy, but that isn't abnormal with her now.  She used to wake up happy. I walked in to find the space heater leaning against her knee.  Right above her knee, really.  I was like "Lizzy, you can chuck a toy across the room but you can't just push this heater off you?"  I then realized just how "special", "handicapped", "mentally retarded" she really was.  Call it whatever you want, my kid is REALLY disabled and I was slapped in the face with a dose of reality.  Her skin was bubbling and falling off.  It was a second degree burn.  It was bad.  Just push it off.  Move it!  Doesn't that hurt?

I was treating it best I knew how. A few days after, a friend from work, who used to be a paramedic, told me to take her to the doctor and just get her checked out.  I didn't realize infections and burns go hand in hand.  I called immediately and got her in that afternoon.  We love our pediatrician.  When she walked in the room, I said "before you look at it, just know this momma has tried very hard to treat it." She looked at it and said it looks exactly as it should and that she would just prescribe a different cream than I was using.  No infection.  Em was with me and before the doctor came in I said to Em, "look at Lizzy's feet when she crosses her legs.  Her feet get purple because her circulation is bad." I then pulled off her sock and found her big toe had a huge bruise under the nail!  Really? So the doctor prescribed an antibiotic for that.  It literally looks like it got smashed!  My goodness.  I might need to take her in once a month for them to give her an all over check up.

I am thinking of changing the name of my blog. I'm not enjoying life with CP right now.  I don't think she is either.


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