My Family

My Family

Friday, October 14, 2016

We've hit 5!!!

Five years ago something amazing happened.  A little girl was born at 24 weeks old.  Her mom was addicted to drugs and not fit to parent her so that little girl was put up for adoption.

Nine months later she came into our home and hearts.

She was little and full of sass!  She changed our lives.  

Through all the years and medical crap that we've had to wade through she's always been a trooper. But at the back of my mind an old neurologist we went to at VCU told us, she will never make 5.  

But guess what?  Today my daughter not only has made 5 she is also doing other things that people said she would never be able to do.  It's always going to be an uphill battle for her but my daughter is a fighter.  She fights and she triumphs.  
My daughter is a super hero rock star diva who wants to be called by her stage name, Barbra (thanks Kate for that one).  Every day is a gift and a blessing around here.  We celebrate every inch stone, every smile, and everyday.  

Happy Birthday to a little girl who has made my days brighter, my nights longer (because we don't sleep), and who has taught me so much more than I will ever teach her.  I love you.  

Wednesday, August 31, 2016

Serving for a Cause

"You know," the doctor said to me quietly as we were leaving the appointment, "a service animal is just what you little girl needs.  They are wonderful with children and can be trained to do so much."

Flashback to 40 minutes ago.  We had just been called back to see the doctor.  He had come in and we had talked.  Cary Lynn immediately froze in her chair.  She knew who this guy was and she knew it was going to hurt.  A little whimper escaped her lips.  That whimper turned into piercing screams as she was pulled and prodded.  She then started trying to launch into her vampire routine.  You could hear us all the way through the 3rd floor.

"Hey, call in Sarge."  The Dr. turned to the nurse who came from the other end of the building to see what was happening while I tried to crawl under a table.  Cary Lynn was put in my hands and her screams of rage became gulping cries.

Enter an 800 year old dog.  (Maybe not that old but no spring chicken either).  He saw my daughter and began to lick her toes.  Her cries disappeared and a what the hey expression replaced it.  I whispered to her, "It's a doggie."  Her face lit up and she began to squeal with joy.  We put her back down for the exam and I kept looking at her like she was a bomb ready to go off.  But Sarge kept her occupied and delighted the rest of the exam.

The doctor's words echoed in my mind as I left.  All through the ride home and into the days that followed.  So our search began.  It had to be a dog that was just right.  But then we hit dead ends. There wasn't a service agency placing dogs.  It was frustrating.  I spent hours on the phone, emailing, and following leads.  Every one was a dead end.  The last call I made I got really mad and ended up in tears.  The lovely woman made a simple suggestion.  Train your own.

So I scrapped all my original research and started again.  The more I found out about it, the more excited I became.  This dog could not only help my daughter, but my son as well.  It could be Super Dog!!  I was so stoked!

But I was also not dumb.  I have many talents.  Training a service dog is a bit out of my realm.  So I talked to a bunch of other people.  One name came up over and over.  Dee Bogetti.  You can check her out here.  I liked her right from the start.  She is smart, no nonsense, and knows dogs.  She came to our home the day we brought Noel to live with us.

She was little and a ball of personality.  I was a little concerned about how she and Cary Lynn would hit it off.  
Buuutttt it seemed I wasted a good worry on nothing much.

Now the story could have ended here and I could just say she's a Great Dane and everyone loves her, the end.  But Noel serves a purpose.  She's not just here to inhale kibble and grace my sofa.  She has a job.  It is a 24/7 job with no holidays, no sick leave, and no slacking.

For my son she is comfort and safety.  You see her following him around in the last picture.  She's not just doing that because she has nothing better to do with her life.  Marvin is a runner.  Loud noises, any danger real or imagined, when he triggers she is there.  Her calming presence, the way she is attuned to him and when he starts amping up, and how she pulls on his shirt or herds him to a safe location.  Noel has given me peace of mind when she is on the job with Marvin.

For Cary Lynn, Noel has proved time and time again that she is worth her weight in kibble and cheese.  She is able to alert me when Cary Lynn is becoming ill or needs me.  That's not something you can necessarily teach an animal.  Noel has saved us from several visits to the hospital by alerting me before I knew there was a problem.  Her keen animal senses are superior to our human ones.  She also provides my daughter with comfort from doctors that poke and prod, she can bring and carry medical supplies, she can activate switches and doors in the home.  The more training she has the more she will learn.  

Training is important, but it can also come with a cost.  We are very blessed.  An amazing foundation, We Heart Harlie and Friends (you can visit them here), has started an on line fundraiser to help us fund Noel's training.  This organization helps families with medically fragile children and has a lot of amazing people.  But they can't do it alone (see I bet you knew there was a catch!). 

This is where you, the reader comes in.  There are many things you can do.  The most awesome one would be to donate.  If you feel that's something you can do you can go here.  You can also share this post.  The more shares, the more people we can reach.  The more people that see our story the more that may be willing to help lend a hand.  You can even share the link to the fundraiser.  Pin us, tweet us, whatever you do.  It only takes one small stone to start a ripple in a pond.  Let's make some waves! 
Noel continues to learn and every training brings us one step closer to getting her to become what she already is in her heart.  A service dog.  Serving for two children and making this mama's load lighter. A hero in fur.  

Sunday, July 31, 2016

Dysautonomic Days and Nights

I remember growing up learning about David, the boy in the bubble.  He was stuck in sterile areas, forced to watch the world go by from the safety of a bubble.  Many attempts were made so that he could live a normal life, but David still passed away at a very young age.

For parents with special needs children it seems like a lot of time is spent watching the world go by while our kids are having to be placed in situations to keep them safe.  Some days they have to be placed in a bubble.  Not necessarily an actual bubble, but a bubble nonetheless. These bubbles need to be put in place so our children can stay safe and well.

Cary Lynn has over 30 diagnosis.  That's a lot for a 25 pound peanut.  One of her labels is dysautonomia.

Dysautonomia is a medical term often utilized for a group of complex conditions that are caused by a dysfunction of the autonomic nervous system (ANS). The ANS regulates all of the unconscious functions of the body, including the cardiovascular system, gastrointestinal system, metabolic system, and endocrine system. A dysfunction of the ANS can cause debilitating symptoms and may pose significant challenges for effective medical treatment.

Other symptoms can include poor sucking at birth, drooling or feeding problems, poor muscle tone, delayed walking and speech, unexplained very high fevers or very low temperatures, wide swings in blood pressure, episodic vomiting, frequent lung infections or pneumonias, poor weight gain and growth, decreased or no reaction to pain, excessive sweating, cold hands and feet, a smooth tongue due to absent taste buds, and early spinal curvature. Ninety percent of children have curvature of the spine.

Right now girls outnumber boy 5:1 and there is no cure.  Symptoms can be monitored and managed. Before 1950s children often died before they reached 5 years old.  Today patients have a 50% chance of making it into their 30s. There is NO CURE.  NADA, ZILCH, ZIP.

So how does this affect Cary Lynn?  Well due to premature birth and a stage three brain bleed her ANS is in layman terms, roached.  She could be sitting in a room watching TV and all of a sudden jack a high temperature.  There isn't a rhyme or reason, she just does.  Her hands and feet are cold, her GI and endocrine system play havoc on her, and she doesn't like to have a normal blood pressure.
The biggest thing is that she misses out on a lot life has to offer.  Today we had a family reunion. Most people pack the kids, toys, food, and hit the open road.  I on the other hand packed three bags of medical supplies, a service dog, and the emergency numbers of all her main doctors.  I had to get clearance from medical people and work through scenarios with them just in case she had some sort of problem.

Don't get me wrong.  I'm thankful for a caring team that fights to keep my child healthy and out of the hospital.  Every day that we make it though without medical mishaps is a good day.  But it's hard. While the family is outside Cary Lynn has to stay in the house because she can't regulate her temperature.  I have to do body checks every 20 minutes.  She was perfectly happy.  She had her service dog and mamas undivided attention.  But as I watched my son kayak and run around outside with family I mourned the fact that my little girl can't have something that so many people take for granted.

We also had to come early to avoid heat.  But even doing that we still had to leave.  Cary Lynn started overheating and started having an episode.  So I had to grab her and go.  It stunk.  I'd rather be with my family.  Shannon says they understand.  I wish I did.  It makes me angry sometimes that she misses out.

Today we were lucky.  We got her taken care of and she's now happily singing to her dog while poking her ears.  (The dog wasn't as happy and just relocated out of reach.) We don't have to go to an emergency room and she's stabilized.  For that I'm thankful.  I'm also hopeful that someday there may be a cure or some new medications that will work even better.  Because you need hope through all of this.  Sometimes its all you have so you hold on super tight.  Plus Cary Lynn is a fighter.  She stays strong through everything and because she strong I need to be strong too.  So we will fight this battle the same way we fight everything else.  Strong and together.

Sunday, June 12, 2016

Four Years

It's been four years.  Four years since we came home from Colorado and found out there was a little girl.  This little girl.
Her name was Harmani (pronounced Har-man-hee).  She was just a bitty bean and didn't have the best odds.  Her social worker, doctors, and specialists gave us the grim reality based facts of caring for a "child like her".  

But there was something about her.  The way her personality sparkled through, her big eyes, happy smile, and the way she bit the doctors.  Her moxy.  She has fire inside her and her spirit is unquenchable.  

It has been an amazing journey.  One that has been full of ups, downs, and more loop de loops than the best roller coaster around.  
But she's come so far.  Farther that most thought possible.  We still have a long ways to go.  We have surgeries ahead,  more doctors and therapies, and schooling.  But through it all Cary Lynn continues to triumph and her spirit is determined even when her body fights against her.  This little girl is going to change the world around her just as much as she's changed mine.  

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.