Genetics, G-Tubes, and Betsy Ross?

This has been a massively busy week.  It seems like we have been flying be the seat of our pants for most of it.

Cary Lynn has been on the road.  She had a stellar rock out PT and Speech session.  OT comes after speech and she did OK with that as well, but the first session takes a lot out of her.  Her glasses made a big difference.  Now if I could convince her of that.

We visited a new and less exciting specialist this week.  We took a trip to genetics and wasted three hours of our lives.  It took 30 minutes to park, then they got us in a room and promptly forgot about us for 45 minutes.  When my nurse and I tracked down people they were like, "oh yeah, we forgot."  Gee, makes you feel warm and fuzzy all over.  Then they took 10 minutes to look at her said, "we don't think we will find anything, she is disabled." Wow.  That was an epiphany.  So we went to blood work and they took some blood.  We will probably never hear from them again and that is OK with me.

The highlight of this visit was the parking people.  It took four attendant to argue over parking a car, one was busy showing his tattoos to people and the lady who cut in the parking line and proceeded to have a fight with another attendant.  A big one.  Then we waited for over 30 minutes for the car.  Sigh.

But we did make it home (I had my doubts, but we made it).  Then on Tuesday we saw our Vision Person and Cary Lynn made her first art project:).

Mama is proud.  I think that she has a future in the arts:).  OK, maybe I'm getting a little carried away, but I do love it.  And she loved doing it.  

Yesterday was a big day.  We went to see another new Dr.  When Cary Lynn was discharged from the hospital she came home with an NG tube.  An NG tube runs from your nose to tummy.  Since the tube insertion she has gained nearly 3 pounds.  That is a big deal when you are considered failure to thrive.  But an NG tube is not a permanent solution.  It is uncomfortable and Cary likes to tug it out.  And chew on it.  Ew.  

So we had to make a hard choice.  We had a bunch of Doctors, consultations, and opinions.  It basically boils down to this.  Eating is a challenge.  And when you have CP, slow digestion, and chronic constipation, and DI you need some extra support.  Not necessarily forever, but if you had to use all your energy and strength eating all day long that's energy you can't use for rolling, sitting, that sort of thing.  Plus you can be weakened so easily.  So we are going with a G-Tube.  

This is sort of an idea of what will happen to Cary Lynn.  Hers will look like a button but it is the same idea.  This tube is less invasive (believe it or not) than an NG.  It also gives direct access to her tummy which will open up a whole lot of other issues (can you say stomach bile stains five times fast) but the pros outweigh the cons at this time so we are set for surgery next week.  I am pretty darn nervous that it is happening so fast, but I am hoping that once it is done and Cary Lynn is on the mend that she will continue with getting stronger.  

Now make no mistakes.  She still has to eat and drink orally, but this is a good back up for days when the eating and drinking don't happen.  And because she has so many GI issues and complications right now she is 50 percent orally and 50 percent tube fed.  It is working for us.  It is not my perfect solution, but she is doing better than ever.  Sometimes when you live this life you have to let your dreams of your perfect life solutions die.  When you do that, amazingly your kids seem to do so much better.  

Now on to American history.  Bet you didn't know that Betsy Ross was the reason we celebrated President's Day.  Neither did I.  

Marvin has been struggling in school.  It seems that he just has a harder time of some things.  It is almost like we need to pre-teach him, teach him, and post teach him.  We got study guides to American Holidays and Presidents.  I sat him down.  We went through the information.  He got it.  Then he took two tests.  His teacher said he didn't do well.  I'm not sure if he failed both tests, but it looks like he may have.  When I asked him about it he claims he never learned the materials.  Ugh.  

I keep reminding myself when I am about to loose all of my patience and sanity that my son is a miracle.  He got his brains beat and scrambled and he lived.  He lived and is growing and making it day to day.  He processes slower.  It takes him more time to understand things.  To do things.  To learn.  

We won a major front for him.  We are getting him an IEP.  This will help him at school.  He needs more support than most kids.  He needs more time.  He needs more.  

In the process of the IEP I am also working with a developmental opthamologist, getting him tested for dyslexia, and finding ways to compensate for auditory and visual processing disorders.  It is enough stuff to test the patience of a saint and I am no saint.  

But it is not the milestones we celebrate around here.  It is the inch stones.  Those precious moments that shed a little light on places that can be dark and scary.  The moment when Marvin understands a concept and it sticks in his head.  When Cary Lynn pulls a cotton ball with little hands that will not always do what they should.  When Marvin reads a book becasue he wants to, not because I make him.  When Cary Lynn does a half roll in bed and gets tangled up in her tubing.  

Those moments make it worth it.  Those moments tell me that we are doing something right around here.  They bring light and make me stand in awe of my children who have survived and are thriving despite it all.  

Dwelling in the Valley of the Shadow

It's been a long time since I've posted, but it feels even longer.  I feel like I've lived a thousand days and nights in the past few weeks.

Things started good.  Cary Lynn was eating, gaining some weight, and we were making some really good strides with her.  Her tone was improving and at her last PT appointment they said that she had her best day yet.  She got a prescription for glasses to help with her nearsightedness and a good bill of health from our pediatrician.

Then she threw up her evening feed.  No biggie.  She was probably backed up.  We gave he some extra meds and tucked her in.  But the next day she wasn't right.  She looked and acted off.  We had an appointment for AFO fittings but I cancelled that and took her into the Pediatric Er.

We did an emergency CAT scan for shunt failure.  And we started an IV to rehydrate her.  They ran a battery of tests and they decided to keep her for a "day or so".  So they put us on the regular pediatric floor.  She was pretty happy and I figured like most of her GI bugs, she would be OK in about 48 hours or so.

But this virus had other ideas.

This was during the worst of it.  All she could do was throw up and moan.  And sleep.  She would whimper mama over and over and over.  But she wouldn't let you touch her.  It was heart breaking.  And she just got worse.  We moved to the PICU after three solid days of puking.  Her sodium levels plummeted.  Her little body just had a hard time.

Then Shannon and I got sick.  I was banished from the hospital.  I talked to my doctor and found out the the noro and roto viruses were going around.  So I stayed home and made lots of calls.  I started to rally and went back to the hospital.

We had a great Dr. this time.  He told me that she would come home a very sick little girl that needed more intensive care.  So he was constantly after me to take care of myself.  But it was so hard.  It was hard when everything that you love best in the world is stuck in a hospital bed.

The Dr.s say it is not the CP that shortens your life.  It is the "other things".  Complications.  So every hospital visit I ask or think is this the time that the "other things" will claim her?  Will she stay with us awhile longer or do I need to think about good-bye?  I know it sounds morbid but when you live with a medically fragile child you walk a different path.  It can be a lonely path but it also changes you into a stronger person.

This time though, Cary Lynn decided that she likes it here.  With us:).  Our Dr. placed an NG tube in her.  An NG tube is a tube that goes from your nose down your throat into your stomach.  Thanks to that tube Cary Lynn was able to eat again.

You can see she looks better.  And she has her new glasses on too (she hates the glasses by the way.).

So she came home.  She came home weak, exhausted, and afraid.  Every touch at the hospital involved poking or temperature taking.  Plus every time she cried for more than two seconds they did blood work and thought that the world was coming to an end.  I kid you not.  The first time they called a team in and the lead doctor diagnosed her with a poopy diaper.  The second time they called a team in and the doctor told them her feet were cold and to put some socks on her.  Yup.  I guess sometimes when you get all those degrees and all that extra schooling your common sense has no room to live upstairs with the rest of all that medical information.

So she is still pretty skittish.  She is afraid to be touched and moved around too much.  I am slowly and gently and very patiently working with her.  She also needs to be fed pretty much around the clock.  So she has the NG tube for now, but we will be getting a G tube for her soon.  We have tried so hard to do it all orally, but her poor little body just won't work the right way.  So she needs support.  And we are going to give her all she needs.

So we are just taking it one day at a time.  One hour, sometimes even one minute.  I have taken out my anxiety on something I CAN fix.  My house.  I have bleached, lysoled, re-bleached, and 409'd the tar out of everything.  I tried to convince Shannon that bleach baths were all the rage, but no go on that.  We are starting to feel better.  On the outside we are healing.  On the inside I am still a little rough.  It will take time.  Time and love.  Both of which we have.

Sometimes you dwell in the valley of the shadow and sometimes you get to walk in the meadow with bright sunshine.  I have been in the valley and thanks to love, prayers, support, and doctors who think poopy diapers are a crisis I am slowly making my way back to meadows.  With a little time and love I will get there.

When its hard to hope

There are times in my journey that it gets hard.  That I just want to get off the merry go round of life and head to a beach or something.

This week has been brutal.  Marvin recovered from Christmas break and started school again.  He was not happy to go.  All of his anxiety took over and he spent most mornings crying and afternoons holding onto my waist and crying.  Why doesn't teacher like me?  Why can't I understand the words?  Why can't I do the work?  Why can't the cat eat out of the refrigerator?  O.K. the cat didn't have much to do with school, but it kind of sends mommy over the edge to see the cat being fed out of the fridge.

We also have had unpredictable weather.  I miss living up north in a way.  The people didn't cringe over ice and snow.  So we missed school.  While I am typing this it is raining and school is closed.  Well it was a bit of ice mixed in earlier and I don't begrudge the school for being cautious and trying to avoid lawsuits from people when you have a child who needs routine and structure and you yank it out from under them it doesn't bode well.

Cary Lynn picked up a really rotten cold that has been going around causing her to feel generally miserable.  And cranky.  Plus she doesn't want to eat and we go to a new GI on Monday.  So that will be loads of fun.

To top off a hard week we went to neurology.  That is usually one of my favorite doctors.  I like who we have.  She is positive and usually pretty great to visit.  And after a fun trip to the pediatrician yesterday because of Cary's bad cold (we have to do lung checks to make sure her lungs stay gunk free) I was ready for this visit.

But this time was different.  This time we talked about Cary Lynn's MRI.  In depth.  I think I have gone over some of her unique brain functions a few times.  But here is what I walked away with:

1.  Her brain is injured.  Severely.  Picture a brain.  A healthy one.  Now imagine that it has been subject to massive damage.  Tons of mini strokes, excessive fluid, and hemorrhaging. These damages are irreversible.  They simply can't be fixed.  No surgery, no vitamins, nothing.

2.  Cary Lynn functions may be limited.  I knew that.   Her cerebellum is also affected.  She may never walk.  Or be able to communicate.  She may function at much lower levels.  She has the possibility to have seizures at the drop of a hat and her shunt can stop working at any time.

3.  Because of all her complexities her life span may be limited.  Very limited.

I am not God.  I really don't want that job.  But that last one was hard to hear.  It was like stabbing a knife in my heart and soul.  Then I was blithely told that there was not much they could do, see you in six months.  I really wanted to snap back, if my child is alive, sure no problem!  But I didn't.  I just made an appointment.

The thing is Cary Lynn is complex.  Marvin is complex.  The blu-ray player in my house is complex.  Life is complex.  It is hard to hang on some weeks.  But I do.

I did take away a few positives from the visit.  Cary Lynn is doing more than they thought she would be able to.  After poking at her a few times at home and feeding her cookies in her mesh she certainly didn't act like she was about to pass into the great beyond.  So I think we are good.

My children are fighters.  They have come so far.  I know that they may not be able to do things.  I know that they may have limitations.  But am I gonna tell them that?  Hell no.  At the end of the day we don't know what their futures hold.  The doctors have all admitted that.

It can be hard to hope.  It can be hard to have the dreams you have for your children come smashing down around you.  But you start to build new dreams.  I can't loose my hope because if I do my children loose it as well.  And I can't do that to them.  Or me.

I also can't dwell in the land of tomorrow and what ifs.  It will destroy me.  So I choose to live day by day, minute by minute.  I will take it as it comes.  The good, the bad, and the dirty diapers.  Because I refuse to give up.  I refuse to loose hope.  My children show me strength and courage day by day.  I owe it to them to do the same.

Christmas 2013 Wrap Up

Christmas started a little early in our house.  I'm not talking about 3am.  I'm talking about months early.  Think Halloween.  Yup.

Our church puts on a Christmas play and the play director approached us when we were out grabbing Kit-Kats about the play.  She asked if Marvin was going to be in it.  When he hesitated, I quipped, "Sure if you can find a spot for Cary Lynn."  I then did what every good mommy does.  I forgot all about it.  Yup, that's how I roll:).  If it isn't written down or burned into my brain with lasers you might as well forget it.

Well, apparently the play director didn't.  When she presented her group with the challenge of including a non-mobile, non-verbal kid they didn't blink.  When Marvin came home with his part after practice I was informed of how my daughter was going to be an angel in the play.  What???  At that point my daughter was eating and spitting her food all over me so angel was not what I was thinking of, but I'm pretty sure they didn't want the alternative in the nativity.

So with some Christmas lights, a wagon, and lots of batting and tape a little ingenuity this is what happens:

It was awesome.  For people whose kids do this stuff all the time they may fail to understand how important it is.  But it is.  It is so important.  I really didn't think Cary Lynn would be in this Christmas play.  Or any play in the future.  But she took to the role like a duck to water. I loved how they lifted her up on stage and she made spitting noises.  It was magical for me.  I recorded it.  Unfortunately, I got a little over excited and think I missed Marvin speaking his line (shhh... we say nothing.).  But I did catch him doing his whoop whoop sign at then end of the play and really if you are going to embarrass them later on down the line that is the stuff you need to have on hand anyway.

We also had Christmas.  Marvin started Christmas eve by spiking a bit of a fever.  So we missed one of the many family gatherings that Shannon has.  And he has many gatherings.  I love them all, but if I had to recall every name I would be in trouble.  Thankfully, most of them know my name.

On Christmas Day Santa came!!!  This is where we tend to have some trouble.  Cary Lynn can't open gifts and really looses interest after about 10 seconds.  Marvin gets totally overwhelmed and goes into sensory overload.  I wish I had the kids that got up and ran to their stockings and ripped into presents like crazy.  Instead I get the kids that melt down and throw an hour long screaming tantrum.

But this year I got a little smarter.  I put gifts in gift bags, kept the numbers down, and the stockings were pretty pitiful by "normal" standards.  But we made it through Christmas morning with no melt downs.

"Santa" left educational and useful gifts, like books.  Marvin was pretty happy.  Then we pushed the envelope and went to church.  Again, we did OK.  A couple of rough moments, but Marvin was so enamored by kneeling in the pews and going up to holy communion, that it kept him diverted.

Then we went to Shannon's parents.  They did an awesome job. Unfortunately, I blew it.  Marvin got a scooter.  That's all he saw, all he wanted, and the rest could have disappeared and he would have been good.  But I got into traditional Christmas mode.  I kept trying to drag him back in and show him stuff.  Sigh.  You would think after all the classes, books, and articles I have read that I would have learned by now.

Yes, Marvin blew up.  For about an hour he raged.  And I was left feeling frustrated, upset, and downright embarrassed.  But after he was done and he was nothing more than a giant puddle on the bed and I was left feeling like the worst parent in the world for just pushing him I decided that if he can't change just yet I need to change.  I don't want to bubble wrap him from the world.  But I do need to change how I respond so maybe Christmas can be a better thing for both of us.  To let him lead me with his cues.  To prep him beforehand.  And maybe try to make things simpler for him.  To do less instead of trying to cram 8 million things into one day.

So we get up and try again.  I may never have my Norman Rockwell Christmas, but hey, I really don't know anyone who does.  I can't force my kids into molds that don't fit them.  I can however accept and love them the way they are.  They are my children, but also my teachers.  They show me that even though things can be hard at times and melt downs happen that the storm blows over and we pick ourselves up and try again.

Taking a New Look at Things

Boy, I think I should just call it a day after thinking about a title.  Or just post a date like lots of my fellow bloggers do, but I do love a good title.  I have a feeling though that you really don't want me babbling on about that:).

So this past week we made a pilgrimage to Pittsburgh.  When you have children with multiple special needs sometimes no matter how much you wish, you can't meet all of their needs in one location.  Cary Lynn has many needs, but I often find myself struggling to get her the care she needs where she lives.  Especially, her CVI.

Since we brought her home I heard so many things about CVI and one thing would often contradict the other thing.  I found myself confused, aggravated, and just at a profound loss as to what needed to happen.  Tracking or no tracking?  Color or black and white?  Light or dark?  The list went on and on and on.

I also found a lack of opthamologists that understood any of it.  They wanted to wait and see. Something my daughter couldn't afford to do.

Then I wondered why I was going to all this trouble.  Why not go to the person who did all the original work.  Dr. Roman.  So I called a few months back and got the very last appointment of the year.  It was my Christmas miracle.

The days flew by and we got ready to roll.  We went a few days early and we saw some of Pittsburgh.  I think our favorite spot was the aviary.  As a side note, I am allergic to feathers, but my children love birds.  So what's a mom to do.  Basically I sucked it up, took some allergy meds and fed the Lorikeets with my little one.

Cary Lynn loved them.  One landed on my arm and nibbled on her ear and she just laughed.  It was nice to do normal things.  Plus the staff was very accommodating.  I sneezed like crazy all night but it was worth it to make her happy like that.

The next day we went to West Penn Hospital and our first visit with the View Program.  Dr. Roman came out to greet us herself.  A side note on this.  I have read all her books, articles, and watched her.  She is like the Cher of the CVI world.  I was so worried I would make an absolute fool of myself and say something dumb.  But she put me right at ease.

For the next 2 and 1/2 hours (yes she took that much time for us!) she went over everything and I got lots of answers.  And practical ways to incorporate vision into everyday life.  Plus I have her phone number and e-mail address so I can contact her.  She also is willing to talk to Cary's doctors and therapists.  Wow.  So here is mostly what we came away with.

-There are three phases of CVI.  One is the most basic and three is the most high functioning. Cary Lynn is a phase one with her foot in the door of a phase two.  That means she is moving from being a passive gazer into a more proactive vision realm where she can learn to interact with her world making eyes and hands work together.

-Cary Lynn would rather everyone else do the work for her and she can just sit on her tookas.  I was already aware of that and Dr. Roman picked that up in about 15 minutes of meeting her.  She needs to be firmly pushed in the right direction.  But that tends to be the way she is with all things that involve work:).  So I was given tips on how to push her.

-What does she see?  OK here it goes.  Follow me on this.  Imagine you are in an airplane.  You are 3,000 feet in the air and we are talking about the Mayans.  You have a window seat and glance out of the plane all the while discussing Mayans.  How much do you see?  You know things are there, but it is hard to see what they are at 3,000 feet in the air.  Plus you are distracted by Mayan culture and my amazing amounts of knowledge on it.  That is what Cary Lynn sees.  She is in an airplane and distracted by sounds and activity around her.  That is what most CVI kids see.  They DO see, but it is hard for them to place the pieces of it all together.

So how do we make Cary see things better.  Well we are back in the airplane again.  I have fallen asleep and while we were talking the Chipmunk apocalypse that the Mayans had foretold has happened. (You should have payed attention when I was telling you about this). We are flying over Vegas at 3,000 feet and all there is left is Caesar's Palace.  There are three giant spotlights highlighting it.  I bet you can figure out what it is.

So it is a pretty simple solution.  Isolate and highlight what we want Cary Lynn to see.  We have been doing that already, but with Dr. Roman's guidance and helpful tips I feel like I can do it better.

-Also we need to push to make vision a priority at ALL of her therapies.  Making she she is in the best positions and placements are a must.  The more we use her eyes the better she learns to interpret the world around her.

-She also needs glasses.  It won't fix CVI, but she is nearsighted and that will help her.

The trip was amazing.  Meeting Dr. Roman was the best.  But learning that my child CAN and DOES see was priceless.  Looking ahead I have all sorts of hopes and dreams for my daughter. And a feeling of great optimism that we can accomplish so much.  It will be an uphill battle most of the time.  My little girl is not easily persuaded that work is fun.  She has her own opinions about that.  But with all the people fighting for us and supporting us we will make it. One step at a time.

Taking a Stand

I don't know how many people do Facebook, but all through November there was a kind of game.  People posted what they were thankful for.  I was a little (OK a lot) obnoxious and would post silly stuff like how I was thankful that my family knew how to hang the TP.  I did post some serious stuff because I am grateful.  Always.  Well most of the time:).  Lets be real here.  But something happened.  November ended.

With that the some of the people who wrote the longest posts of gratitude were mysteriously replaced by pod people.  Nothing made them happy and everything made them miserable.  It was almost like a contest to see who could be the most unhappy and dissatisfied with their lives.  I thought they may have needed to blow some steam, but it is like Debbie Downer came to town.  I felt the uncontrollable urge to tell them to get off the cross because someone else needed the wood.

A couple of months ago I noticed things were really bumpy here.  Hubby and I were fighting more, Marvin was having all sorts of problems at school and at home.  Cary Lynn was not her normal happy self.  She was crabby and irritable.  Things were not going well.  At all.  It turns out it was my fault.  Well some of it.

We had had a really hard time.  My husband was in a bad car accident.  Cary Lynn had more health problems.  Marvin was just loosing it.  One of pets was purposefully killed. I was not getting the Norman Rockwell life I signed up for.  Things were headed downhill with no breaks.  So all I could do was be unhappy.  I could put on a good face, but I was just miserable. And it showed.  In everything I did.

A few weeks ago my daughter was in the hospital.  Again.  I was really drowning.  Then they came.  The family next door.  The nurses who were so cheerful with me and Cary never smiled.  One came in my room from next door wiping tears from her eyes.  I went to the lounge to my drink from the fridge.  The child's grandpa sat in there with his shoulders shaking.  The pain was living and almost unbearable.  It was all I could do to walk out of that room.  I put the tissue box next to him and met his eyes.  I said nothing and left.  Counselors, doctors, and nurses surrounded that family.  The little one lay still and grey.  I knew then that that little one wasn't coming home.

I sat in my room.  And thought.  And thought.  There is something in the world.  It comes to claim your joy.  It comes to rob you of peace, happiness, and joy.  It is evil.  It exists and wants to take you.  I looked in the mirror and didn't like who I saw.  I was being destroyed by this evil.  Bit by bit.  And worse yet, I was taking my family with me.

I would love to say this is when heaven opened up and the angles sang.  That I went home and everything was magically better.  The children are saints, I have my halo and crowns of glory, and my husband is now perfect.  Ahem.  Not quite.  But I have learned a few things.

Attitude makes a HUGE impact.  I am not saying that you should never be sad or angry.  Nor will I come beat you over the head with a rainbow of joy.  Life isn't easy at times.  It's not for the faint of heart.  Its stinking hard work.  But when I sit and mope and whine about it all the time what message am I sending?  What am I showing my children?  I want to raise strong resilient children.  Ones who life may knock down but who will have the strength to get up and stand again.  They watch me.  All the time.  Heavens, I'm lucky if I can go to the bathroom around here by myself.  So when life pushes at me I push right back.

So what if you can't push back?  What if it is too hard?  I hear you.  But if you can't stand alone find someone to stand with you.  Alone we are weak and vulnerable.  Together we are strong.  Don't let evil overcome the good in you.  Don't bottle it up either.  Find someone, anyone.  If you don't like people talk to your pet.  The best conversations I have had are with my rabbits.  They don't judge.  They eat your furniture, but they are great listeners.  You don't like pets, find a rock, tree, anything.  Anne Frank wrote in a diary she name Kitty.  There is always something.  Mourn, rage, but then release.  Realize that people stand with you, support you, and care.

I can't change the world around me.  I can't stop the bad things.  But I CAN and WILL control how I respond.  I will reclaim a peaceful home.  I WILL teach my children strength. I will also teach them that sometimes I fall on my face, but I get back up again.  This is a legacy that I will leave them.  Resilience, strength, and most of all hope.  I won't always be successful, but I'm not perfect.  But I will take a stand against evil.  I won't let myself be robbed.  It's not fun to feel that way and it drags everyone down and color the world grey and hopeless.  I will stand with the help of friends, family, and my rabbits:).  I am not trying to be Pollyanna.  But I do want to have peace of heart and mind.  I am taking my stand.

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: en.wikipedia.org/wiki/Diabetes_insipidus.  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.