My Family

My Family

Wednesday, April 16, 2014

Tough Choices

When I was heading to an appointment with Cary Lynn the other day I was stopped by a hello baby girl aren't you getting so big?  I had to take a second look cause I was pretty sure it wasn't me they were talking about (and if it was they might be getting yelled at).

It was actually Cary's biological brother and his adoptive mom.  Cary Lynn has two bio brothers.  Both are older.  Both are adopted to separate families.  The bio parents have no rights on any of them.

After a hello we made small talk.  For me it is awkward.  There is no Peggy Post on how to handle this. Cary's bio brothers are adorable.  The oldest has multiple special needs as well.  He looked happy in his walker and spent time trying to bop Cary Lynn on the legs while I was talking.

I enjoy talking with both families.  I like seeing them proudly show off their children.  The children are flourishing and growing with their families.  But we adults have had to make some tough choices.

The toughest one has been what do we do with sibling relationships?  For Marvin it was cut and dried. The bio family is out of the picture and due to the severe abuse it is for the best.  But Cary Lynn's siblings are in good places.  They are loved and cared for.  When we see each other at appointments they seem so glad to see her.  They talk about how well she is growing and how much she can do.  We chat and talk about what our kids are up to.  We share how much they look alike.  How they are joyful happy kids.

It is a dance.  We are careful not to step on toes and I am careful not to share too much.  I see them looking at her and the wheels turning.  There are unspoken words that hang around as we are careful not to overstep boundaries that we lay down.

For me I am torn.  Being adopted I know what it is like to have all sorts of questions that have no answers. To wonder, to question.  To think about things.  I don't want Cary Lynn to feel resentful that I have taken something away from her.  I know the other families feel that as well.  We have often voiced it.  I feel guilty after these meetings often.  Did I give her enough time?  Was I supportive of her feelings?  Did her bio brother have to hit her that hard?

We watch.  But so far the children are all little.  They don't understand that the person who is right next to them is a blood relative.  So for now we have decided not to force relationships. Someday Cary Lynn will be older and if she wants to form new relationships with her bio brothers we will support her.  She will be ready for it then.  I speak from experience on this one.  It is better to wait for now.  Until she is old enough and ready for the truth.

 Cary Lynn's world is our family.  Her brother's aren't the ones out there.  Marvin is the one she calls "brub".  I'm Mama and Shannon is Dah.  We have become a strong unit and an amazing and dynamic family. And I am blessed to have them all in my life:).  


Saturday, April 5, 2014

Paying it forward

We have been really busy around here.  I love to blog and keep people in the loop, but the last few weeks I am lucky if I have time to tie my own shoes let alone post.  With two kids running to appointments. therapies, and our inbound services it really can get crazy.

The last couple of posts were kind of downers.  But life tends to go a hurricane 5 category speed for me so I just don't have time to weep into my lace handkerchiefs and lay on the sofa and moan (really, plus we are getting our house painted so I can't even find the sofa!)

But I have been up to something.  Well several somethings.  I tend to go full throttle:).

When we visited Dr. Roman a few months ago Cary Lynn got to experience a LightAide for the first time.  She loved it!  I really wanted to get her one, but the price just threw me.  Special needs stuff doesn't come cheap.  Then I got to thinking about the other visually impaired children in our area.  How LightAide could help them as well.  I also wanted to find a way to thank two very special places near and dear to our heart.  The Virginia School for the Deaf and Blind (VSDB) and Children's Hospital of Brooke Road.  Both places have gone above and beyond the call of duty for our little girl.  When we were handed our little bundle of pink joy she came with (and now has even more) labels than a pickle bottle.  It was like being told to drive to Wisconsin with no map or gps.  I had a general idea of how to get there, but with no map there was no way I could do it.

VSDB and Children's became my map for my daughter.  Sometimes I still take shortcuts and senic detours, but for the most part my map has been pretty darn good.  So I set out with the lofty goal of not one, but three LightAides.  Thanks to fundraising and some really generous people and a very generous discount from LightAide I was able to get three LightAides, a carrying case, and switch for everyone.  VSDB has theirs, Brooke Road gets theirs Monday if all goes well, and we have had the chance to use ours and share with several families in the area!
Sorry, I do have pictures other than the boxed one, but my camera has gone awol with the painting!  I will post some of Cary playing with it soon!

So while this was going on some mama blogging friends of mine in different states have had children hospitalized.  One of the mom's blogs has really gotten hold of my heart.  Mostly because her little boy mirrors so many of my daughter's complex needs.  Her blog is here. Caden and many other children have so much going on.  Their families live in the hospital.  The things that mean the most to me when I am there is the hot meals delivered, the company (it is boring sitting there), and the little gifts that just lift your spirits and say hey I'm thinking of you!  So I have been sending out care packages.  Shhhh, don't tell.  
These are just some of the things that I enjoy when I take my "vacations" to VCU.  Haha. Anyway, a few of these boxes have been dispatched and the recipients should get them by next week.  I have really enjoyed doing this.

So many people have done amazing things for our family.  After a while the thank you just seemed so shallow and empty.  Life is bumpy and sometimes the going is hard for our family. For me.  But I always hold on to the good that happens and we always make it through:).  It's past time for us to spread it on and I'm so ready to pay it forward!

Monday, March 17, 2014

Cheat Sheet

I have always promised to be honest in the blog.  I would rather have the truth even if it is cold, hard and painful than a pretty well dressed lie.  Sometimes the way I see truth is different than others do.  But even if you disagree on it, it is still my truth.

The truth hurts at times.  This last week the truth came and smacked me over the head. Hard.  I still have some lumps left on my heart and cuts left in my soul.

It started out with a visit.  For a while I had been asking a local organization to come out and meet our family.  I had found the organization on line and loved the support that they offered.  I really wanted to be part of it and I know some families that are.  They rave about it.

It too some time but they came to my home.  They met me and Cary Lynn.  Then they wanted to ask questions.  Sure, no problem.  I glibly claimed I had answers.

The first question, "Would you put a trachea tube in your daughter?"  What???  Well, I have been asked many questions before, but have rarely been stumped like that one.  I had to think.  Well, I know many kids in my SN circles that have them and really I already had stuck a tube in the child for nutrients, what's one more?  "Sure."  I say slowly.

Do you wish in life that sometimes someone would just dangle a giant fish line from the sky with a piece of paper attached to it saying here are the answers to these questions.   This was one of those times.

The questions were hard.  The consisted of quality or quantity of life and would I resuscitate?  I was told there are no "right" answers, but I felt for sure that there must be.  There has to be an answer.  So I answered.  I'm not going to go into what I answered, but I felt that I was making the right choice and holding up my beliefs.

While it is hard to answer these questions it is still harder to pretend that they don't exist.  To not talk about them or even think about them.  The truth of the matter is that Cary Lynn has multiple special needs and is medically fragile.  It is a fact of life like the sky is above us and the ground is below us.  It also does not make this organization mean to talk about these things.  They are trying to help us by supporting our family with these choices.

It also does not mean that I am pushing Cary Lynn into her grave.  Believe me when I say no one loves her like I do and no one wants to keep her here forever and a day like me.  But sometimes you have to look at the truth and decide whether you are going to deal with it, ignore it and hope it goes away, or run from it.  I am many things, but I'm not a coward.  Nor am I going to pretend these things don't exist.  They do.

What it does mean is that each moment is a little more special.  I cherish time with my kids.  I enjoy the little moments and inch stones.  I laugh more and love a bit harder.  I hold tight to my little miracles.  Both of them.  I don't spend as much time sweating the small stuff (well at least I try not to).  We also don't spend every day dwelling on our mortality around here.  That is morbid.  And unhealthy.  Mostly I spend my days trying to figure out where the magical elf lives who steals the mate to my children's socks and why I can't ever find my keys and favorite coffee mug.  We live our lives like you live them.  We aren't saints or heroes, just regular people trying to navigate extraordinary circumstances.

In the end I'm glad I had the conversation.  I needed to have it.  It hurts, but it also heals.  I love my daughter.  She isn't worried about what tomorrow brings into her life.  She is a happy and joyful child.  No matter what she always has a smile.  She is strong, brave, and in my eyes pretty much perfect.  So we will celebrate each day and enjoy each moment.  I will leave the future to take care of itself and dwell in the present and in the moment with my little ones.

Tuesday, March 4, 2014

The Tube and I

It has been a super challenging week.  And a hard one.  When your child goes in for surgery it is expected to be stressful as is but we had a lot of nasty surprises along the way.

We went in last Wednesday.  Because Cary has DI she needs fluids and extra is always good so we checked in to casa VCU medical center in the morning and hooked her up.  Surgery was scheduled for about 9:30am Thursday.  No biggie right?

Well, it started going down hill pretty quick.  We were bumped and told that we were the third instead of second on the docket.  No big deal.  But the surgery that was supposed to happen early in the morning didn't happen until about 6 at night.  When your child has an underlying condition (DI or anything else) the more you keep them off their schedule the wonkier they get.  Even with an IV Cary was wilting.  All I kept getting was an I'm so sorry swan song, but no results or action.

Then there was the "training".  The gi surgery nurse came in and announced that she was going to be my new best friend.  Cary was screaming and she told me that she was here to show me the ropes. I asked if she could show me after the surgery since Cary was a mess, I was stressed out, and Cary had no tube in her to practice on.  The nurse assured me she would be back later to show me the ropes and spent 3 minutes naming the parts and what they did and buzzed on out.  OK.

We did make surgery.  We made it through surgery.  And now my daughter has some new hardware.

This is the tube several days post-op.  She has some extra stitchery.  They inserted a camera through her belly button and placed it in.  It has two areas.  The top is where you put the food in and once the stitch that holds it in place is removed I shall be able to burp or vent extra air through the tube.  Fun for all.  The bottom hole is where you insert water to hold the balloon in place that anchors it in.  If your balloon pops or deflates you need to have pretty quick reflexes to save the day.  Let's hope for Cary's sake that that doesn't happen anytime soon.  

Now there is also the outer extras that help with the process.  

On your left is a Ferrel bag.  This helps "vent" Cary Lynn.  She is hooked up to this 24/7 for the time being.  On the right is the feeder bag where I place her pediasure and water.  Below is the pump which puts it all in her.  It is not a great pump, but hey at least I had it on hand.

Here is the tubing and that little orange tip is the Ferrel bag.  It attaches to the port.  Cary has more clamps, attachments, and gadgets than my DVR player.  I have been calling her my little robot.

I will have to say that this has all been a nightmare.  When the surgery was done the floor nurses insisted that the gi nurse train me.  The gi nurse insisted that the floor nurses train me. So I ended up watching a lot of You Tube videos and got a nurse who spent a few minutes with me.

Then there was the fact that no one thought that I might need supplies.  Thankfully, I have some awesome tubie mamas who stepped up to the plate.  The mama I got supplies from even bought my kids webkins which they love!  Cary Lynn has been toting her pink poodle with her everywhere.  After spending 45 minutes on the phone with my supply company today I will have some supplies for my daughter.  Some are back ordered (like seriously, how do you run out of gauze?), but we are making progress.  The sad part is that I got Tupperware from my cousin's party in Minnesota before I can get medical supplies for my daughter on the other side of town.

Then there was the nurse that I was supposed to get.  Yes, when you get extra gadgets on your child you are supposed to get a home health nurse come out and check on you so you aren't tubing your child's ear.  I'm not by the way:).  I am having trouble remembering to unclamp Cary so she "flows" but at least I am mostly getting stuff in the right spot:).  So once again the nurses are playing a game of its not my job.  But once I called my feeding program and explained that Cary was dropping weight due to how the drs and nurses and hospital nutrition were handling the feeds.  I now have feeding looking into a nurse for me and promises of nutrition support.  I know K.  She will deliver.

It was tough.  My floor Dr was a student and really green behind the ears.  He didn't understand complex kids.  VCU isn't my favorite place.  There are a few Drs and nurses that I love love love.  However, most of the time the right hand doesn't know what the left hand is doing.  It can be really scary at times.

But we pulled through.  I have support.  I have a community of parent with SN kids that I can call in a flap 24/7.  And trust me, I have been in a flap quite a bit lately.  I know I will get it. But I also know that I can be a big time spaz and little things can freak me out quite easily. Ask my husband and Cary's nurse.  Although, her nurse claims I have gotten a lot better.  So does my husband:).

Am I thankful that I did this?  All of Cary's specialists claim I will be thankful.  So do most of her therapists.  The truth is I'm not thankful.  I wish she didn't need this.  But she does.  Cary Lynn has lived through a lot.  Her body betrays her daily.  I see her silent struggles to do things.  I see her try super hard to make her body do what her mind wants it to do.  But her body at times acts independently of her mind.  It can't always eat well, chew well or take in enough nutrients to thrive.  That's why we have a g-tube.  It was a road I didn't (and still don't) want to travel.  But we are walking down that road now so I have to make the best of it.  I will adjust.  I always do.  And so does Cary.  We are both survivors.  And we are both blessed to have a lot of love and support.  For now that is enough to keep us both in the fight.

Thursday, February 20, 2014

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.  
Gastronomy tube placement illustration
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.  

Saturday, February 8, 2014

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.

Friday, January 10, 2014

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.