My Family

My Family

Saturday, May 28, 2016

Left Behind

When I graduated college I couldn't get out of Nebraska fast enough.  There wasn't anything there and I was ready for adventure.  During my years of being a nanny I got to travel, see and do.  If my friend called me up at 11pm and said, "hey I'm heading to Pennsylvania or New York or Rhode Island" I had my bags packed and ready.

I loved going places.  When I met my future husband while we dated we discussed our travel plans. Both of us loved going places.  When we got married it was a rare weekend that we were home. When we moved to Florida we spent a lot of time going places.  I loved being out and about.

We moved back to Virginia and started the adoption process.  As most of you know this little butterbean showed up.
I love finding his older pictures.  Marvin is three in this one.  Anyway, I digress.  

When Marvin came home we tried to pick up and resume our busy schedule.  Unfortunately, Marvin had problems right from the get go.  He didn't just go with the flow.  He demanded a tight schedule. Everything had to be just so.  A few eyebrows were quirked here and there but we adapted.  We had to do less and eventually found out Marvin has ADHD, sensory processing disorder, and recently we have received the possible news that he may be on the spectrum.  But that's a whole other post for another day.  

Then we got our youngest.  We knew when we brought her home she would be a game changer but I didn't realize some of the things we would be giving up.  
But one look and we were both goners.  But things changed.  My day to day routines were disrupted with hospitals, doctors, diagnosis, therapies.  Rinse, lather, repeat.  I became familiar with new medical terms, medicines, and therapeutic interventions. 

One of the things that changed was our ability to go when and where we wanted.  My husband was talking to me today and told me that people were giving him grief about not being able to see the kids.  I don't think people understand what taking the kids to places looks likes for our family.  

Say I'm going to take the kids to my in laws.  They live 20 minutes away from the house.  Ok, easy enough right?  Throw a diaper bag and the kids in the car and go right?  WRONG!  

Marvin has a hard time with scheduling.  We work very hard to bring him during his better times in the day.  He has food allergies so I pack him food that he can eat.  That's not too bad.  We also talk with him before and after leaving and weave in lots of social stories about different situations.  Most of the time he does pretty well.  He loves seeing Grandma and Pawpaw.  

For Cary Lynn we have to take a little more.  I pack a diaper bag and three outfits because she will manage to to go through at least one.  Plus she may overheat since she can't regulate her body temperature.  So extra is a must.  We then have bags for poop.  Not bad yet, right? 

Ok, so CL can't sit and it isn't always easy dragging a wheelchair up stairs.  So we often need to pack something to sit in.  She's also G-Tube fed.  So there needs to be tube supplies.  And food in case she needs to eat.  Oh and medications.  So there needs to be a cooler of sorts to keep stuff cold.  

And a medical bag.  For a light trip I only need the spare 15-20 extra items.  I keep it in the car.  I've had to send Shannon back on many occasions though anyway.  

So that's a pretty good description of a nearby trip.  These trips are planned as well.  We don't just wake up and say "let's go."  Supplies need to be handy and there is prep work involved.  

Let's say we are going a little further.  Like to the zoo.  It's an hour away.  And outside.  We plan at least a week in advance.  I scan the weather like a stalker after it's prey.  I plan the times with care.  

For Marvin we start slowly prepping him.  Social stories, things he might see, not to eat certain things.  

For Cary Lynn I pack the diaper bag, cooler, and the medical bag.  But now we add a few more things.  We take extra supplies for Cary Lynn because the weather is hotter.  Her cool wraps, water for bolusing through the tube, an umbrella, hat and fan if we have one.  We also take about 30 extra items.  Syringes, tubes, a partridge in a pear tree.....  It can be a lot.  Often times it looks like I'm getting ready to move out I have so many bags by the front door.  

So every trip, every invitation has to be considered.  You can just imagine what a big trip would look like around here.  It's also not just the packing.  Cary Lynn has a lot of medical conditions.  Life threatening medical conditions.  

She has a weakened immune system.  A cold from another child can put mine in the hospital.  It isn't going to get better.  She also can't tolerate being outside for long periods.  She can't regulate her body temperature.  Hot and cold conditions can really make her sick.  Or drain her energy reserves.  I'd love to just get up and go with her, but her little body isn't made for that.  

Sometimes, it's just me.  I've had 30 appointments, someone got a new label, or it's just been a more exhausting week of caregiving.  I'm tired.  Like tired to the bone and back tired.  I just want to unwind with a good book, have a big ugly cry, or process what I've just learned.  I love my kids, but it isn't always an easy road to walk.  

We do miss seeing people.  I miss it.  I don't like not going places and I don't like my husband getting flack over it.  But I wouldn't change the life I have now for the one I had.  Life before kids was good but this life is so much better.  We will do our best and hopefully people will understand that we are trying.  But these two are worth it all.  

Wednesday, April 27, 2016

Hips, Books, Bangs, and Motorcycles....Oh My!!

Well as you can tell by the blog title we have a lot that's been going on around here.  I joke with people that I wouldn't know what to do with a dull day but there's a ring of truth to that one.  I was sick this past weekend with a cold and honestly I got so fidgety just trying to rest and recuperate that I just gave up towards the end!

We've been spending a majority of our days at UVA in the Battle building.   The parking attendant knows me and we have had some fun conversations.  When you walk in there's a food cart during certain times and the nice lady asks me if I want my "usual" (a black tea).  I find humor in this and crack a wry smile as we chat briefly.  She always offers me a milk too in case my little girl needs it and tosses me a wink.  She remembers the panicked mama from several months before whose appointments ran over and "surprise" she forgot food.  When you have a typical kid no biggie, that's why there are golden arches.  A tubie child is a bit difficult to offer a mcburger to.  Since I don't have a mcblender in my purse.....

Anyway we have had some good and not so good appointments.  The good ones have been for my son mostly.  We went to UVA since VCU stopped returning my phone calls and my son started having medicine reactions.  I called my daughter's Dr in a panic and we were able to get things straightened out.  They also squeezed me into neurology.  Our Dr. was great.  She explained that VCU had great concussion advice, 20 years ago......   Unfortunately, science has evolved at a more rapid pace than they have.  Marvin was on unnecessary medication, bad advice, and mom did you notice that his left eye is wonky?  I'd have that checked out, let me get you a referral ASAP!  So for Marvin we now are off the bad meds, following a new protocol and gee guess what?  He's slowly improving.  Yay!!

For Cary Lynn she decided its really not fair that Marvin gets all the attention has of late, ha!  We found out that her IV/IG levels are lower than normal.  Which means a few things.  Yes it proves that she is dysautonomic and that she's medically fragile.  Unfortunately, it also means that exposing her won't give her a heartier immune system.  I know people always say that.  But in her case exposing her means chipping away at an already shortened life span.  So we have to keep her well.  Oh and her hips are dislocating.  Quite a bit.  From last years x-rays to this year there has been changes and it hasn't been great.  We don't have really good options.  The surgery she could get would need to be repeated often and because she isn't very mobile at this time the general consensus is we need to let her hips just fall out of socket.  It won't hurt her.  But it hurts me.  There is really nothing worse than being told there is nothing to do.

Unless you are being told that your child needs a new piece of equipment.  A lift.  A lift looks like this:
You basically put the person in a sling and it helps lift them.  The practical part of me says, well this is good and can possibly save my back.  The human part of me is having a really hard time with this. Another piece that screams your child is disabled.  Another chip in my heart.  Another quiet round of tears.  I'll adjust, it will just take a little time.  

So while the kids have managed to keep me fairly busy I've managed to squeeze in a couple of cool things.  I was asked to contribute to two books.  One being about special needs parenting and the other on adoption.  Both causes near and dear to my heart.  One is out as an e-book and the other is being assembled now as I write this.  Writing has been so therapeutic for me right now and telling our stories is important.  These projects are just volunteer on my behalf so no giant royalty checks, lol! But every word I write helps me find truth and helps me let go.  

There are also lots of good people out there.  Sometimes in places you don't think to look.  Last night we were blessed to meet some of them.  My husband tells me that you never know when you are going to meet angels in disguise.  Last night a whole herd of them blasted into our driveway on motorcycles.  They are called Guilty Ones and they came and spoke to our family.  We sat with a house full of gentlemen that some may never give the time of day to.  In living the life our family lives we've learned that what you see is not always what you get.  So while my son was enjoying the attention of two of the club members I got to share a little bit about our family.  To talk about our children and our day to day lives.  To share some of our needs as a family.  Plus it was just stinking cool to hang out with them!!  When they left my son cried for about 30 minutes because he was having so much fun.  So if you see these guys anywhere smile, wave, better yet talk with them.  They help families like ours and that means a lot.  

They journey we take isn't always an easy one, but it's the only life I've known and frankly, I don't think I'd do much different if I could (maybe I'd remember to pack Cary Lynn's lunch that one day, but hey it all worked out).  We take it as it comes and just roll around here.  It's who we are and what we do.  We also appreciate everything that others take the time to do for us to.  It's never dull but I wouldn't have it any other way.  





Sunday, April 3, 2016

Bang ups and Shake ups

Marvin is a pretty active kid.  Anyone who knows us or has spent more than three seconds with my son knows this.  He's a kid forever on the move.  That one kid when you try to take a picture you get blurry snapshots nine times out of ten!
He also likes activity and motion.  As you can see from exhibit A above any object that produces that desired outcome is his favorite.  I had to beg him to stand still for this pic!  For Marvin movement is something his body needs and craves.  It helps him be calm and regulate himself.  But a couple of weeks ago all that changed.  

We were at church.  My son attends Sunday School while we have service.  I went to pick him up from class and his teacher brought him to me.  She said that he got a little bump and cut and that he was fine.  A friend had hurt him.  

I figured there was some roughhousing going on but I would address it later.  I took Marvin to the car. He had started to cry and cry.  His head hurt.  Badly.  I noticed in addition to the gash there was a bump.  Because Marvin has Shaken Baby Syndrome we take head injuries seriously.  He was taken to our local emergency clinic.  We were told it was a soft tissue injury.  

Afterwards I was still noticing that Marvin wasn't himself.  I contacted his OT and between the two of us and Marvin we found out the whole story.  Marvin was picked up and thrown against a metal cabinet.  The OT told me he had a concussion.  We made an appointment with the Traumatic Brain Injury clinic at our local hospital.  Meanwhile Marvin went on cognitive rest at the recommendation of the Drs and his OT.

While we waited on the appointment I panicked on a pretty regular basis.  Yes, I know I'm supposed to have it all together, but I was scared.  Very scared.  My son forgot how to write his letters, cried for hours about the pain, and spent many many many hours on the phone trying to figure out if we were supposed to take him to the emergency room.  (Every time the local hospital said no that these were typical concussion symptoms only bring him in if he is throwing up or passes out.).  

The appointment came and after the good Dr tried to figure out how on earth you get a concussion in church of all places a plan was set in place.  It basically involves taking everything that my son loves and can do and telling him no.  

The first thing to go was TV and video games.  That was during cognitive rest.  We don't watch a ton of TV or play a ton of video games, but when you can't have them it makes them that much more attractive and desirable.  Think about your last diet.  Did you say, "Gee I really want carrots and kale!"  or did you spend more time trying to figure out how to get at that candy bar in the pantry when no one was looking?  So my son became more clever at trying to get at these things.  I finally was able to grant him limited access and of course now he isn't as interested. 

We also have to make sure that he gets more rest, he can't spin, run too much, ride a bike, scooter, skateboard, or unicycle, have too much light, noise, stimulation, and stay away from food after midnight.  OK not the food part, but everything else.  I mentioned to the Dr I would have more luck nailing Jello to a tree and teaching my cat to recite Latin.  As I mention this Marvin jumps off the exam table backwards to prove my point.  The Dr. didn't miss a beat and said he could loan me some Latin books to get started with my cat.  Haha.  

I will say it's been hard.  I'd love to candy coat it and say Marvin has settled in, picked up stamp collection, and has been waiting patiently while daily reciting his prayers for healing.  He's also taken up Gregorian chanting and knitting.  He's decided that the true path to enlightenment is found in hours of quiet meditation.  

No.  Just no.  What it has been is hard.  Marvin doesn't want to be still.  Ever.  He's frustrated, upset, and antsy.  When you take away things that a child needs to self regulate and don't find a proper substitution then you set yourself and your child up for failure.  

We are still trying.  Trying to find ways to help Marvin help himself.  He has discovered that he loves books on CD and we have been listening to those.  I put a shout out and have had all sorts of wonderful suggestions.  I plan on trying each and every one.  Thanks to a super creative OT he has some safe activities that help satisfy some of his cravings for movement and motion.  We also found an art class where he can do fun things and not overtax himself.  

Another thing we have found out is that our dog who enjoys licking shoes will not leave my son's side.  She has risen to the occasion of service dog.  She follows him from room to room.  She knows when he is dizzy and immediately moves her body in a way that corrects him.  If he sits down and puts his hands on his head she immediately comes and finds me and leads me to him.  Have you ever been shepherded by a Great Dane?   It's an experience.  But I feel better knowing that Noel has his back too.  

This is going to take time.  I wish I could say he'll be great in a week or so.  But it may take up to a year or longer for him to heal from this.  I'm not a patient soul and neither is my son.  There will be long term effects for this tragic accident.  The biggest one for me is will he be safe and protected when he's not with us? I know stuff happens.  He's a little kid.  But to have more stuff happen on top of stuff he's already had happen just doesn't seem fair to me.  I know I'll have to learn to trust that he will be OK out of our line of vision but that's going to take me some time.  

For Marvin it's been hard.  He's trying to adjust to a body that hurts more, has more limitations, and trying to relearn things all over again.  I've been really proud of him.  He hasn't always handled it gracefully and he certainly has been vocal about why he should be allowed to ride his scooter standing on his head while paying a video game, but he went back to Sunday School.  He was terrified but he did it.  That's courage.  He sat down with print outs of letters and spent two days relearning how to write.  That's persistence.  He has put together lego kits that a few months ago he couldn't sit still to do.  That's patience.   He isn't angry at the other kid for what happened and still wants to be his friend.  That's a good heart.  And for now that's all I can really ask for.  

Saturday, February 13, 2016

Finding the Fair

If you were to ask me my personal motto on fairness I would probably sum it up like this:

"Fairness does not mean that everyone gets the same.  Fairness means that everyone gets what they need."  Rick Riordan

That's how I see things.  But living in a household with four unique and diverse personalities there is bound to be a difference in opinion.

My son is 8.  He's very literal.  Metaphors are a waste of breath on him.  He also sees the world in a very different light.  We were reading fairness quotes and I shared mine with him.  He immediately objected to it.  I'm not surprised.  Marvin's quotes on fairness were these: 

"Treat others the way you want to be treated" The Bible
"A person is a person no matter how small"  Dr. Suess
" Remember that there are others watching what you do even if you think there is no one there.  Even stuffed animals have eyes."  Marvin Fields

O.k.  the last one creeped me out a bit and now I'm going to make sure his animals stay far out of my room, but you get the idea.  

Lately fairness has reared its head at our house.  I knew it would come.  I was just hoping that it would have been longer in coming.  Like when he was 18.  

It started simply enough.  The mail came.  Marvin had gotten a Valentine card.  With money.  He was over the moon.  Three dollars is quite a bit when you are 8.  Heck, I'm happy with three dollars! After the usual happy to have money dance he got quiet.  

"Mama, where is Cary's card?"  
"I don't know son.  Maybe it will come in the mail tomorrow.  I've got to make dinner."  And I blew it off.  I had people to feed, a dog to take potty, and Cary Lynn was trying to throw her communication device off her tray.  

But as I was rushing around at a fast clip Marvin sat down at the table, hands folded and head down. A sure Marvin sign that a storm was a brewin.  The Valentine was pushed aside and the money was scattered.  I knew then that this conversation wasn't over.  So I kenneled the dog, parked Cary Lynn in front of Peppa Pig, turned off the oven and sat down.  

"Son......" 
"Mama, why didn't Cary get a Valentine?  It isn't FAIR! If I were sending cards I would make sure that everyone got one.  What if she's sad."  

Sad?  I looked over at Cary Lynn as she was laughing at Daddy Pig and hitting her device.  I really don't think she felt terribly slighted.  I was pretty sure she would not be mired in despair anytime soon.  

But that didn't matter to my son.  What mattered to him was that she didn't get an amazing treat.  I was honestly at a loss.  Marvin is a sensitive and remarkable kid.  He's compassionate and kind.   He loves his family.  He loves his sister.  So I had to scramble.  

"Son what do you think we should do?  How can we make this right?"  (Yay!!  Score a good parenting question for me!!)  

So Marvin thought.  Then his face lit up and he ran to his art supplies.  He made Cary Lynn a beautiful card.  He then took 2 of his 3 dollars and stuck them in the card.  He ran up to Cary Lynn and yelled that she got mail. 

After she had calmed down from being spooked she and Marvin enjoyed the card, the money was put in her piggy bank, and life went back to normal for my son.  

While I returned to my chores a little teary I started worrying.  This isn't the first time Marvin has noticed Cary Lynn being treated differently.  He sees it all the time.  It bothers him.  A lot.  When we go places and see how others interact with her or ignore her.  The questions come later.  And I know that they will only get harder as time goes on.  

How am I going to answer?  What will I say?  I won't always have a brilliant shining response.  I got lucky on the parent dart board this time but what happens next time?  I can't change how people treat my kids.  I can challenge them on their perspectives, but it's still their choice at the end of the day.  

My kids are both amazing.  I see it everyday.  The mom in me sees what the outside world doesn't.  I can only live in a way that hopefully sets a good example for all the eyes in my house (including the creepy stuffed animals) can see.  And that's something you can quote me on.  

Saturday, January 16, 2016

The Warrior

To be a warrior is not a simple matter of wishing to be one. It is rather an endless struggle that will go on to the very last moment of our lives. Nobody is born a warrior, in exactly the same way that nobody is born an average man. We make ourselves into one or the other. — Powerpressive

We don't always get to choose the paths in life that we take.  This picture here is of a good friend.  Like myself, she is a parent to children with multiple and complex needs.  

Growing up I was the quiet kid.  I didn't say much at school.  I was extremely introverted.  I just wanted to live an ordinary everyday life.  Grow up, have a job, get married, find out I was secretly royalty and that my biological family was going to surprise everyone when they came and I was a secret duchess of something.  Hey, even the quiet girls have dreams! 

I did grow up, had a fantastic job, an awesome hubby, and was pretty content to coast on by.   Then my life changed.  

I didn't want to sign up for warrior status.  But when my children came along I found out that nice people can and indeed do finish last.  Not all the time, but a good chunk of it.  

My son wasn't getting what he needed.  I was told over and over again that he was "fine".  I was told this by teachers, some family, and the world at large.  They didn't see the battles and the struggles that we went through day by day.  Something had to change.  Someone had to change.  I had to change.  So I did.  Bit by bit.  

It started out with small changes, pushing back ever so slightly.  The small changes worked and over time I became bolder and bolder.  By the time Cary Lynn joined the family I was on my way to becoming a seasoned warrior.  Over the three years she has been with us I have by and large given up on having a quiet and ordinary life.  My days are filled with advocacy, fighting for needs, pushing against a system that often times works against us. 

Warriors aren't born.  They are made.  They become.  My friend has become a warrior for her children.  Day by day she fights for them.  As do each and every parent of special needs children that I know.  There is not one of us who will stop until our children get what they need.  We have to work much harder at it, but giving up has never been an option.  

There are also side effects of becoming a warrior.  When you make the choice to become one it impacts your family.  My son watches me put on my battle paint and draw my sword for justice.  My daughter hears my voice while I am shouting for equality.  Little by little Marvin and Cary Lynn are starting to pick up their own swords and shields.  I see it day by day.  When my son tells people that he needs a break, that they need to hear his feelings. When my daughter picks up her communication device and says NO NO NO NO NO. When she fights against things that hurt her.  Every day I see proof that I am raising warriors.  

Right now my friend's daughter is in the hospital.  Again.  She had a major colon resection, a J-tube placed, adhesions removed, and a new button placed in her.  I went to the hospital to visit her.  She's in a ton of pain.  But she is also a warrior.  She is fighting hard to recuperate and her strength amazes me.  

As I'm writing this I'm also watching her son and daughter.  They too are becoming warriors. Not because they were so excited about all the fringe benefits they are going to get out of it. But  because their mom is a force to be reckoned with.  Her strong drive and amazing mindset blow me away on a regular basis.  

Her son has changed so much this year.  He's become more expressive, tries to take care of his younger sisters, and has stepped up to the plate time and time again.  Her daughter who sits next to me coloring is the spitting image of her mama.  Her mannerisms  and the way she helps me out with my daughter when she is over show me that some day this little girl is going to take the world by storm.  Our children are reminders and visible benchmarks of the path we have chosen.  

Make no mistake.  We will fight for our children.  We are Warriors.  And I wouldn't have it any other way.  

Sunday, December 20, 2015

Confessions of a Disgruntled Pageant Sheep

It's that time of year again.  It's a time for peace, love, goodwill, and sticking your child in the annual Christmas Pageant.

When I was growing up it wasn't optional.  You were in the pageant.  And chances are if you came in at the bottom of the totem pole you were cast as livestock of sorts.

I was as you can probably guess a sheep.  Sheep 3 to be exact.  A role I was dedicated to bring to life. I was actually a little bent out of shape.  I didn't get to be an Angel or the coveted role of Mary.  I was stuck with a paper bag on my head with cotton balls.  But I was determined to bring all the sheepiness to the role that I could muster.

I was quite shocked when I was told by the blessed virgin to shut up and not bleet so loudly.  The shepherd also was instructed to cane me.  So I did what any self respecting sheep could do.  I threatened to bite Mary and the baby Jesus (it was just a doll don't panic).  Mary immediately tattled on me and I tattled right back.  The director gave the usual "everyone is important" speech to which Mary asserted that she was the queen of the show.  The director then mentioned that she would tell our parents and Mary being afraid of a spanking was quiet and I managed to tone my bleeting down. It was a tragic blow for sheep everywhere but the performance went off well and I only stuck out my tongue at Mary when I was sure no one was watching.

Fast forward to today.  I have much more sympathy with the pageant directors of the world having had to walk a mile in their shoes with having to keep peace through countless programs and deal with my own Marys and sheep.

Today I sat in our church and watched our Cantata.  It was beautiful.  As I watched it I looked at my children and fell back in time.

Not so long ago I was waiting.  Just as the world held it's breath all those years ago I held mine.  We had taken all the classes, gotten a room ready.  I had even heard the voice of my own angel, our son's social worker.  She had proclaimed, "You hadn't gotten any other children because you were meant to be Marvin's mama."  I had believed in the promise and a day before my birthday a son was delivered into our home.

A few years later my second angel visitation, social worker number 2 proclaimed, "This is a very special little girl.  She needs a special family.  I think you are just what we have been waiting for." And  a second promise was kept.

I often think if Mary ever wondered what she signed herself up for?  Did she fully understand what she was doing?  Did she ever say, "What did I get myself into?" Or, "What can I teach Him?  I mean He knows everything for crying out loud?!"

I often find myself thinking those things.  As I look at them I remember all the plans I had.  The things I've wanted to do.  The lessons I planned.  But those dreams have been long ago put aside.  I've found over and over again that my children are the teachers and I am just doing my best to tread water.  I've learned to think new thoughts and dream new dreams.

Joseph and Mary chose to have faith and walk a different path.  Daily I have to do the same.  I watch typical children hit milestones that mine may never reach.  I watch little ones grow and remember that my daughters chances of making it into adulthood are very slim.  I see my son struggle to break free from the abuses of his past.  To realize that he is safe.  The way is often narrow and even though there is always a helping hand along the way, I often walk it alone.  It just is too narrow for others and the dangers scare them.  I don't blame them.  The path I walk has made me who I am today and I don't regret putting my feet on it.

The Cantata wraps up.  I look at two children.  One who is happily humming in her wheelchair and the other one who has been asking, "Are we finished yet?!" since the second song and hasn't been able to keep still.  But I'm all smiles.  It hasn't been easy but nothing that we want badly enough is. Like Mary I can say that I am richly blessed by everything.  My children are a promise fulfilled and a daily reminder that the journey I take is worth it.  Merry Christmas.

Wednesday, November 25, 2015

Finding the Thanks

It's easy to be thankful when things go well.  When Festus pulls all A's, is in honors, and is in the top of everything it's great.  When Gloria makes the cheer team, majors in law and is in line for the Nobel Peace Prize it's even better.

When you are a mom to two kids with dynamic needs it can be harder.  Thankfulness can be elusive.

We made it back from Dr. Roman's visit a few weeks ago.  I had hoped for some amazing and dynamic breakthrough with Cary Lynn's CVI.  What we got was just more questions and confusion on the topic of her vision.

Cary Lynn has made some modest progress.  But not what we had hoped for.  It turns out she may have another visual diagnosis in addition to CVI.  Optic nerve hypoplasia occurs when the optic nerve is underdeveloped.  The visual loss can range from mild to severe.  So even if we correct the CVI Cary Lynn may never have a great amount of functional vision.

I held it together in front of the kids but I got back to the hotel and cried.  I worked so hard to help her vision and it seems like what I did may or may not have mattered.

We also had a visit with her GI dr and found out in an x-ray that she has a subluxation in her hip.  I was hoping for great things from the GI doctor and had high expectations.  But finding a gi doctor who is able to work with medically complex kids out here is like finding a needle in a haystack.  He sat and watched my child scream and bite herself in pain until she bled in the office and all he could say is she does not weigh enough.   Seriously?  I wouldn't take my pet rock back to him at this point!!
Then there is my son.  I found out that he needs speech therapy.  I know those of you who know my very verbal child find this incredibly difficult to comprehend.  I know I did.  His OT started noticing things and referred him.  It turns out he has processing and delay issues.  Speech feels that she can help him with this.  Marvin was not pleased that he needed more help.

He also gets another session of OT in the evenings.  This is a group session with other kids.  He's a little more excited about this one but for me it's just another therapeutic activity that I wish he didn't need.

As if my life isn't exciting and glamorous enough right now Marvin managed to get bronchitis.  I took him in today.  Yay, the party never stops for us.

Soooooo, since we have had so much happen to us all at once, which is kind of how it rolls around here, it can be hard to find thanks.

Yet despite it all, I am thankful.  Today my phone has rang all day.  I've had lots of people check in and offer support. I have an amazing network of friends.  I've also got new ideas to help Cary Lynn deal with her ever increasing pain levels.  I have a wonderful palliative care team who's sole purpose is helping our family find a great plan for Cary Lynn.    

I'm also thankful that we got to the Dr. today.  Marvin is starting some meds and hopefully he will get some much needed rest.  I'm also thankful that I was smart enough to purchase things for our own Thanksgiving meal since my children religiously seem to enjoy getting ill over the holidays.  Due to Marvin and my food allergies I decided it would be smart to make a meal we could eat and maybe puree some for Cary Lynn.  I'm thankful we will have a nice meal to sit down to.

Marvin is also making progress homeschooling.  He has gone from a first grade level to a second grade level.  For us that is a big deal.  He still struggles but he is trying so hard and now that he doesn't feel stressed or pressured his learning is starting to take off.  I'm thankful that he feels safe and that learning has become enjoyable once again.
Most of all I'm thankful for these two.  These kids are amazing.  They have lived through so much and yet find reasons to smile every single day.  They are brave, strong, and proof that you can overcome just about anything that life throws your way.  And for that I am thankful.