My Family

My Family

Wednesday, November 23, 2016

Seasons of Change

I've started this blog post about half a million times and then something always happens and I need to just step back and reevaluate, reflect, and breathe.  A long time ago I decided if we couldn't be normal than I would choose to be happy.  But sometimes it's hard to be happy and you have to work harder at happiness that normalcy!

It's been a roller coaster around here.  Some of the highlights were the celebration of National Adoption Month!


Note my fancy memes.  Oooohhhh aaahhhh.  I was also able to do some speaking on adopting from foster care.  I was excited about that and hopefully will be on a podcast soon talking more about special needs adoption.  

Marvin is getting older and understanding a bit more about the process and the culture.  I am proud to be an adult adoptee and want him to take pride in his unique status as well.  He is already talking about adopting all boys when he is grown up (he's also nine so girls are a big no right now).  

Another really great piece of news is that Marvin passed his weekend seizure study. 
He got to wear a "magic helmet" that itched like all get out and he was told to do "normal activities" like sitting quietly and coloring.  HA HA HA HA.  Ever try to nail Jello to a tree?  Yep, we had to peel him off of swings, trees, and all things Marvin.  It didn't work too well, but we have no active seizures and we survived.  I told the neurologist next time I'd rather be chased by rabid cats up a tree.  
Then we've had some moments that haven't been super great.  We finally got answers on vision with Cary Lynn and they weren't what we were hoping for.  While she does have CVI there is other damage as well.  Let's start with her optic nerve.  And I even brought visuals, yay!  
So this is your optic nerve.  It's healthy, pink, and very happy to be... well working.  
Here you can see a bit better what needs to happen for healthy vision to occur.  Cary Lynn had a lot of damage due to her stage three brain bleed.  The optic nerve, which should look nice and healthy is shriveled and looks like white aspirin.  Her visual cortex is also damaged from pressure.  

Cary Lynn also has ROP or Retinopathy of prematurity (ROP). It is a potentially blinding eye disorder that primarily affects premature infants weighing about 2¾ pounds or less that are born before 31 weeks of gestation. The smaller a baby is at birth, the more likely that baby is to develop ROP. This disorder—which usually develops in both eyes—is one of the most common causes of visual loss in childhood and can lead to lifelong vision impairment and blindness.  

The Dr was very concerned that VCU did not perform surgery to help with the ROP.  Even though she would still have vision issues he felt that surgery would have helped save more of her sight. Since she was a ward of the state at that time we will never know.  And that really hurts more than anything else.  

The Dr was compassionate and all together wonderful.  Cary Lynn can see light, colors, and is responsive to visual stimulus.  He also said that the only person who knows what Cary Lynn CAN see is Cary Lynn.  We were also told that glasses were a waste of time on her as they make things smaller and that's the last thing she needs.  
As you can see she totally agreed with that statement.  It was a hard few days, it didn't really hit me until I was driving home.  I got home, had a really good cry, cleaned a few closets, got mad, and then decided that this doesn't change what we have been doing, and decided to just keep on keeping on. 

I had been feeling better and we were getting back into the groove when another Dr. decided to rain on my parade.  This time it was Marvin and I was sitting in another office and while Marvin got to go hang and watch TV with the ultra cool front office people the Dr. and I were discussing a new piece in Marvin's puzzle.  

Autism.  

It's amazing the power of one word and what it can do to even a stoic been there, done that, bought the T-shirt mom that I tend to be.  

"Mrs. Fields', I've reviewed all of Marvin's testing results, talked to his other Drs., worked with Marvin, and been through all of your notes.  I don't know why everyone has danced around it and I believe in calling a spade a spade.  Have you heard of Asperger's Syndrome or mild autism?"

"I'm sorry, you have the wrong kid.  Marvin isn't autistic, he's a social butterfly.  That just isn't even possible." 

"Mrs. Fields', I know this isn't really fantastic news, but you can be social AND have autism.  Marvin matches the profile and his other Drs. agree that Marvin falls in the spectrum.  The good news is that he's still the same kid you came in here with.  This doesn't change him.  What it does change is how we can work with him better to help him be the best Marvin and the rock star kid that we know he can be. We can help you and your family understand and work with this."  

Needless to say, this was not fantastic news.  But the Dr. is right.  The diagnosis doesn't define him or change him. He's still the same goofy nine year old who talks about video games and sharks nonstop. My cheeseball who likes to ham it up.  He's still Marvin.  
Both of my kids have not changed due to all the new and less than fun diagnosis surrounding them. They both rock out who they are and live loud and proud.  While I'm writing Cary Lynn is napping in her pod swing (we got a nasty virus because no holiday season is complete without disease and pestilence in the house) with her ipad and Marvin is running around outside finding the tallest tree to climb up.  Everything has changed while nothing has changed.  It's just a new season in our home and one that we will adjust and adapt to because like it or not, the changes will keep coming and we will meet them head on.  


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.