My Family

My Family

Friday, December 6, 2013

DI, eating, and all that jazz

Sorry, not catchy title today:).  My energy was spent doing a much needed blog tweak. Check out the new digs around here:).  Updated pics and all.  It was much needed and something I kept putting off.  But our adoption ceremony pictures came back and I decided it was time for some updating.  The kids are getting older but I am staying 25.  That's my story and I'm sticking to it.

So this week we have brought back operation beef up baby and gotten some more answers and questions about Diabetes Insipidus.  It started out with a joyful visit to endocrine.  I enjoy our Dr.  But it seems like they can't make up their mind on whether Cary has DI or not.  If you are interested in reading more about what DI is and need to impress friends, co-workers, or your mom read this:  If you want the abbreviated version this is it.  The pituitary gland does not communicate well with the kidneys.  When a normal person pees we pee out all the bad stuff and hold onto fluids.  DI people pee the fluids and hold onto the bad stuff.

So after finding out that Cary Lynn's sodium levels were dangerously high I was upset.  I kept being told that she was fine and life was grand.  I voiced concerns but they were not heard. Well, lets just say this time I WAS heard loud and crystal clear.  I also got answers.  Cary Lynn has partial DI.  When she is healthy and happy her little body manages.  When she gets sick her little body goes into a tailspin.  So the logical thing is to keep her well and hydrated. For now.  That is not the reality.  And the doctors don't know if it is in her kidneys or centrally located.  It seems like our wonderful hospital lost a lot of her blood.  And put her on IVs with lots of extra sodium in them which jacked up her sodium count.  So the only way we will get answers is a trip to the ER when she gets sick again so they can run tons of blood work.  But for now I would like to stay home so I am pumping her full of liquids.

Which leads me to eating.  Cary Lynn is not a good eater.  She just isn't.  I think back on all the years where I worked with kids and all the advice I gave them to get their kids to eat.  Boy was I so sort of stupid know it all.  Now I am the one being lectured by very well meaning people and it is a bitter pill to swallow.  I wonder how all these parents dealt with me and if they were thinking, "Man, that woman should just shut up!".  I smile, listen. and think, "One day you will be on this side of the fence and it will not be fun."  But I digress.

Cary is stubborn.  She doesn't always feel hungry.  She has vision impairments so imagine being blindfolded and fed.  Add sensory issues to this party and you have a really fun time at the table.  So the first task was getting her to drink something other than pediasure.  She needed clear liquid.  So water was not fun for her.  Neither was apple juice.  While I was fixing her meds I had an epiphany of sorts.  All her meds are strawberry flavored.  So is kool-aid.  So I went to the store, bought out the strawberry packets, brought it home, made it, and stuck it in her med syringe.  Viola!!  Cary Lynn loved it!  So I got bold and introduced some cherry juice. Once again success!  Now don't get all riled up.  I know you can't feed your kids kool-aid and cherry juice.  I have gotten her to take some water.  It's a process.  I am just thankful she is drinking period.

With her hydration coming along nicely we have turned our attention back to food.  Feeding therapy has decided that she is just rotten and I have to be a drill sergeant at meal times.  The spoon will stay poised on my child's lips until she opens.  It seems harsh but it works.  Most times.  She has now developed a habit of spitting hard and the food ends up on me and not in her mouth.  Gotta love it.  But she is starting to eat.  Slowly.  She nibbles and I coax for just one more bite.  She is taking in an ounce to two ounces per feed.  She eats five times a day.  It seems like so little but when you add in eight ounces of water based liquids and twenty four ounces of pediasure that is a lot of food.  The goal is to get her to gain some good weight so she gets stronger.  Well her body needs to get stronger.  She has an iron will already.

It is hard work and a lot of days I am just toast.  But Cary Lynn is worth it.  She continues to surprise me and everyone else.  She brings me so much joy (and laundry with all the food spitting).  Like the little engine that could she chugs slowly up the mountain of life with a great big smile and knowledge that she is able to do it.  A little bit at a time.

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