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.