My Family

My Family

Sunday, May 13, 2018

I'm Moving!!!

Yup, I'm moving.  Not to Tahiti or anything special, but to a new blog address.  I love blogger but wanted to try something a bit different.  So if you still want to keep up with us you can find us here.  

Same blog, a few new additions that I'm working on slowly.  All my old posts are over there too. 

So come follow us at our new edress.  Hope to see you soon! 


Friday, January 19, 2018

If I Only Had A........

Today felt like the Wizard of Oz came to visit in Virginia.  I'm normally at UVA for most of Cary Lynn's care but her neurosurgeon from birth came back to VCU where all of her records are located. For years UVA has begged for them but VCU really doesn't enjoy sharing. 

We had concerns.  We've actually had them for awhile and it was mentioned that we should get a second opinion so I went back.  They say the road to truth and justice is paved with answers so we hoped that we could figure out what's going on with our sweet girl. 

I will say, VCU is a different experience from UVA.  This isn't a good thing.  But we needed answers.  Today we started getting them.

Cary Lynn had something called a rapid MRI.  A rapid MRI is in theory where you are awake and get your head scanned in 10 minutes by a super powerful machine.  Easy right?  Hahaha!!!! 

We came in and had to wait an extra 30 minutes.  Then they had to put Cary Lynn in a papoose wrapper so she wouldn't fall off.  They gave her movie goggles and headphones so she could watch a movie, which thrilled her.   Then they gave me earplugs and left the room. 

About 3 minutes in the alarms go off and all the techs come running in the room.  I think my kid has a major complication as they are rapidly reaching in the machine and yanking her out.  I asked if she was OK and they unwrap her, look her over, and state that her headphones and movie goggles are wrecking the MRI machine.  So after I look my kid over to make sure she's in one piece (she's giggling the whole time) and I get over my urge to throttle the techs for peeling 15 years off my life, they remove the movie stuff, give her plain headphones and we go for take two. 

This time everything works and we are told to go home.  I didn't like that.  UVA always gives results right away and checks to make sure the MRI didn't flip her shunt.  But we went home because I really had had way too much fun already and needed chocolate and a nap.  Cary Lynn giggled and babbled all the way home so I'm pretty sure she was unfazed by it all.  I wish I could let things roll off my back like that. 

Today we went back.  Today I saw my daughter's brain imaging for the first time in two years.  Today I saw both the good and the not so good. 

Let's start with the good.  Cary Lynn has hydrocephalus due to a grade three brain bleed.  She has something called a VP shunt. 
As you can see in this picture, a shunt is placed into the brain and it drains extra fluid from her brain into her abdomen.  Cary Lynn, at birth, had a very large head built up with extra fluid.  This is dangerous.  A shunt relieves the pressure and fluid build up in her brain.  If she didn't have a shunt the fluid would take over and kill her. 

When we last looked at her brain she had quite a bit of fluid.  Enough that others were pretty worried.  When I looked today that fluid in her ventricles has reduced some, which would explain why her head has "shrunk" a bit.  The Dr. liked that part.  So that was good.  The shunt is working and after six years seems to know that mama can only handle but so much. 

So here's where my daughter decided to get "fun".  Cary Lynn sustained quite a bit of damage pre and post birth.  The Dr. was there for a good chunk of this.  He explained to me that he can fix fluid levels but he can't give back what is lost. 

Cary Lynn was born with a damaged  Cerebellum.  For those that aren't fluent in brain here's it's basic job description: The cerebellum receives information from the sensory systems, the spinal cord, and other parts of the brain and then regulates motor movements. The cerebellum coordinates voluntary movements such as posture, balance, coordination, and speech, resulting in smooth and balanced muscular activity. It is also important for learning motor behaviors.

It is a relatively small portion of the brain -- about ten percent of the total weight, but it contains roughly half of the brain's neurons, specialized cells that transmit information via electrical signals.

The cerebellum is located behind the top part of the brain stem (where the spinal cord meets the brain) and is made of two hemispheres (halves).
Sooooo, when she was born that little area of her brain was damaged.  It then started to disappear.  Since her first MRIs she has less and less cerebellum.  Today it's pretty much all gone and it's anticipated by the next MRI that it will be gone. 

You can live without a cerebellum, but it makes things a lot more challenging.  Imagine you buy an Iphone and you can play all the apps, receive calls and texts, snapchat, but you can't MAKE A SINGLE PHONE CALL.  Does your phone still work?  Yes.  Can you use your phone?  Yes.  Is it going to make your life more difficult?  Yes!!!! 

We also have whole brain issues.  There was damage and loss to other parts, but not as profound as the cerebellum.  To add to the fun she also has parts of her brain that have been smoothed by damage.  You brain has bumps called gyri and sulci.  It is important to have these.  They hold neurons and are part of the key to development and smarts.  Not having them means delays and damage. 

This was a hard visit.  I looked at my daughter happily playing with her stuffed monkey and trying to kick the Dr. in the shin every time he came near her.  She has pink cowgirl boots and they are lethal.  I asked the Dr. what he thought.  He was quiet for a moment and then said, "We don't always have the answers, but sometimes we have something better.  We have miracles.  This little lady is a survivor.  She's come a long way.  Let's take it one day at a time." 

So that's what I'm going to do.  We have some answers, and now we've got a plan.  It involves more doctors, but sometimes you have to put on the boots and kick some doctors in the shins to get things done!  My miracle and survivor is a fighter and taking it one day at a time, we will go far. 

Sunday, December 17, 2017

Running the Race Called Life

“In the race of life, you need self confidence, courage and faith in your abilities to win the race.” 
― Lailah Gifty Akita, Think Great: Be Great

We need all of the above plus a dash of humor to get through seasons when times are tough.  

Our family has been busy with our own race.  The kids are each sprinting through at their own pace and moving towards an uncertain finish line.  

Cary Lynn has had a bunch of hurdles, rocks, and bumps thrown on her race way.  Her race has been harder, but you can't keep this girl down.  We had been noticing some concerning symptoms and since she has a shunt we needed to get it checked out.  Her old neurosurgeon is back and we were excited to get in quickly with him.  

He pulled up pictures of her from when she came to the hospital until now.  While the good news is her shunt seems to be working and doing it's job, the bad news is that her brain isn't.  When you are born with significant challenges and have need of intensive intervention to live you are going to see damage.  Cary Lynn's brain has had time to adjust to the trauma that it went through and due to it's severity, some of her brain has died off and disappeared.  So where there used to be brain, fluid has taken it's spot, because you need something there.  Also her gyri and sulci (brain folds) have taken a beating as well.  They used to be bumpier and are now smoothing out.  

What this means, well it means she has brain damage.   It can also impact her life, functions, and longevity.  Along with a new diagnosis of mitochondrial defect, it really threw me for a loop.  I know things can be hard for her, but why do they have to be this hard???  It's frustrating for me because I just don't think she needs one more thing thrown at her.  

For Cary Lynn it's another day at the ranch.  The kid doesn't let anyone or anything define her.  She's continuing to rock her at home therapy program, demand books about birds, and annoy her brother by kicking him and screeching at him every time he venture near her turf.  For a mom who has long ago decided that normal is a setting on the dryer, these moments of regular family life are desperately appreciated.  

Marvin's race seems to have hit a smoother path and my runner is taking life in stride.  He's started school again.  We were all really hesitant, but Marvin is thriving.  The school has gone above and beyond my expectations.  They listened to his diagnosis, have adapted to his needs, and are helping him become more independent.  This is the first school that he's been at that I don't worry about him during the day.  His team has noticed a marked difference as well.  My only regret is that we didn't find this school last year.  

Marvin is having genetic testing done as well.  With a diagnosis of Autism you can have some other problems, like Fragile X syndrome.  His Dr. wants to rule out some things.  Marvin was hoping it would get him out of chores, but no such luck on that, HA!  He insists if he has it he will be an X-Man and really, there isn't any arguing with him so I just say whatever and move on.  

We'll keep on running.  My kids run their races like a boss and it's all I can do to keep up.  With their strength and independence they are going to give it all they've got and cross the finish line champions.  






Sunday, November 12, 2017

National Adoption Month

I rarely regret my action but I often regret my inaction ― Avina Celeste

How often do we regret being inactive.  To be silent may be the easier road but it's not often the right one.  Today is Orphan Sunday and National Adoption Month.  Every year I take time to reflect on our family and how adoption impacted us.  

Adoption has changed us.  It's changed the way we see the world.  It's brought us challenges, hardship, and heartaches.  It's also brought more joy than I can fathom.  

These kids have rocked my world.  I could go on and on.  But at the end of the day, they are lucky.  They won't have to worry about where there next meal comes from, where they will sleep tonight, if they will get medical care, and who loves them.  

Today in Virginia there are 1,400 children who don't know these things.  Our state is ranked the worst in the country for the adoption of older children (yay us!).  This year 500 teens will age out without being adopted.  One in four will have involvement in the justice system.  One in five will be homeless.  Nearly 1/2 will drop out of school.

These children feel alone, abandoned, and scared.  Family means everything.  It is our past, present and future rolled into one.  Without having a safe place to fall the future is pretty grim for these kids.  

There is a pretty powerful video put out by The Children's Home Society.  You can watch it here.  Listen to what these kids have to say.  Listen as a kid sits huddled and says that her dad's punches hurt, but his words hurt more.  Listen as the story says that for children who are abused, neglected, and abandoned a safe, loving family is just a dream.  

These kids aren't someone else's responsibility.  They are OUR responsibility.  We can't just hope that someone else will step up to the plate.  










I want you to take a good look at these kids.  They are at this time some of the many children waiting.  Waiting for a mama who will bake cookies with them, to read to them, to be there for them.  For a daddy who will walk them down the aisle, listen to their day, toss a ball around.  They don't want a perfect parent, they just want A parent.  

It's not an easy road, but I can say that it's a journey that you won't regret.  

If you want to learn more about Virginia's waiting children and how you can change a life by adoption contact Children's Home Society.  Click here to find out more.  


Adopt, change a life one child at a time. 

Saturday, September 9, 2017

I didn't think about your daughter

In our house you will find that we are a blend of options in discovering what works best for our kids. You will see things you are used to seeing like medications, equipment, that sort of stuff.  Along side of that you will also see some non-traditional things as well.  Essential oils, my giant textbooks of herbal medicines, and maybe some familiar equipment used in different ways.

You see, I've had to stretch and grow to figure out what works for my kids.  We don't all come out of the same cereal box and things that work for others don't always work for us.  Things aren't always black and white.  They are often various shades of grey.

Recently my son was accepted into a unique study.  A worldwide research project is being conducted to see if a unique treatment can be beneficial for kids like Marvin.  It would help with some of his dietary woes and we were excited to try it.  The practitioner had recently relocated and gave me her new address.  When we arrived this is what we saw.


I drove around the building thinking this was a joke.  There wasn't a handicapped accessible spot anywhere.  So I called the provider and let them know we were here and the building had NO ACCESS!  

They came down and their first words were, "I wasn't thinking about your daughter."  Their last location was accessible and we were able to get Cary Lynn up and down.  Despite the fact that we had seen this person in their previous location numerous times and my daughter was with me every time for some reason it escaped this person's attention that my child was in a wheelchair.  

The next words weren't much better, that this was a pro bono treatment.  Maybe I could find someone who needed community service hours to help with one kid.  They didn't want to treat in their home because that was their me time.  I was rather steamed and wanted to offer a shovel while they were burying themselves. 

Look, I feel like we need to have a conversation here.  You may not think about my daughter or the 2.2 million people in wheelchairs or the 6.5 million people who use walkers, canes, or crutches to get around but maybe you should.  

I'm not saying that every home needs to rush out and become accessible but I would like you to think about how it feels not to be included.  How hard it is on our family and others like us because our kids can't go places.  You may not be able to fix your home but how about finding a place that everyone can go to.  

If you are practicing medicine or holistic treatments think of the large population you are limiting. The people who would probably benefit the most from your treatments have no access to you. Clients that would pay you for your services if they could reach you will take their dollars and go someplace else.  

Bottom line, it's not OK and no amount of apologizing is going to fix that piece of my heart that just got a little more battered.  It's not OK to justify the lack of accessibility by saying that this is a pro-bono service.  Free does not mean that you can get away with whatever you want.  That would be the equivalent of me saying I could rob your home and take your valuables because I am giving you free babysitting.  It's a ludicrous argument.   

We drove for a while in silence.  Marvin piped up, "Mama are you upset?"  I told him I was, but I would try to think about our options.  "Well, I don't really need to do this.  I'd rather go someplace that is nice to my sister.  Maybe we can find something more fun to do, like legos!"  

The study would have been awesome, but you know what?  My kid already is awesome.  Both of them are.  If people can't see that then they are the ones with the real handicap.  

Sunday, September 3, 2017

Mountain Highs and Valley Lows

There is no black-and-white situation. It's all part of life. Highs, lows, middles. -Van Morrison

That is the truth.  When you parent special needs kids you ride that high/low wave.  This past month has been full of mountain highs and valley lows for us.  While I was in church I spent a lot of time thinking about the past month.  The good, the bad, and the downright frustrating.

We've been dealing with our school system.  It hasn't been good.  LCPS is supposed to provide some very basic services to my daughter.  I'm talking about bare bones here.  They basically need to check in once a week and see if she's still breathing.  Not too challenging in my book.  School has been going for a month and right now we have yet to have any services provided.  We had someone lined up but at the last minute this paragon of virtue decided not to do their job.  I've emailed our school board representative but they also chose to ignore me.  It's sad that she has to go without minimal services.  But out here it's really not unusual.  Which makes it even more sad.

Marvin has an MRI this week.  I'm used to Cary Lynn having them but for Marvin this was something new.  UVA wants to check out some "suspicious" items.  They have tried to get his early MRIs he had beforehand, but so far when Marvin became our son his previous records disappeared. What if they find something?  He already has so much going on I really don't think he needs more. He also developed Osgood Schlatters disease.  You can read about it here, but basically it's glorified growing pains.  Fun fun fun.

The insurance has changed here as well.  We've all been moved to something called CCC+.  It's basically an MCO.  I've spent hours on the phone trying to figure out what Drs. are covered.  We also just got a call from Marvin's psychologist's office about insurance.  There is this really big myth that insurance covers it all.  It doesn't.  We pay out of pocket for a lot of stuff.  Therapies, medical supplies, some Drs., and extras.  Those things aren't cheap.  As I'm writing this I've found out my daughter's food supply may be in danger.  If insurance decides to stop covering it that's $3,000 we will have to cough up to make sure she eats.  Little things add up.

My husband works really hard.  I used to work.  I now am a full time medical manager.  I miss working.  Not just for the income, but because I miss adult conversation.  I don't always find fulfillment in Legos, Minecraft, Peg and Cat, and discussing the importance of proper hygiene.  Go figure.  Or just a break.  My family is coming in a couple of weeks and I'm so grateful.  They will provide much needed respite but Colorado is a long ways a way to get the support that we need.

Despite the valleys, our mountain views have been really good.  Cary Lynn has managed to gain about 20 pounds in a year.  We now don't have to see the dietician as often, yay!!  She has had a good stretch of being healthy.  For that we are thankful.  She also is getting home educated (because I can't trust the school system to do their job). and is a feisty, sassy, and lippy kindergartener.  I tell her she's my most difficult pupil and she spits at me.  So we are off with a bang.

We tried school for a little bit with Marvin last year.  After talking with his team, the increase in his appointments, and the need for very tailored learning accommodations he's back at home.  He's doing really well and keeps saying he is glad to be back at home.  Not every kid is going to do well in a school situation.  We've accepted that Marvin is unique and that this is the way he learns best for this season.  Now he's a confident fifth grader and able to advocate for his learning needs.  Plus he delights in showing his younger sister how school "is supposed to happen".

All in all we are marching forward.  We may get knocked down but we always get back up again.  I'm proud of us all.  I'm also thankful for the blessings we have.  The kids are healthy, they are learning. Despite repeated hygiene conversations, I'm pretty happy too.  We will get through the valleys because my kids deserve more time in the mountains.  Here's to hoping we spend more time on the mountains this month.

 

Sunday, August 27, 2017

Freedom




I watched them go away to this place everyday.
They be forced to sit all day with bodies that didn't obey. 
They just couldn't follow the rules. 
So they never fit in at the schools. 

In meetings, IEPS, and emails I'd spend my days. 
Fighting for accommodations in a system set in it's ways. 
Their words were cold, and left me with chills. 
"Why don't you just get some prescription pills?"

I watched their happiness slip away.
Full of anxiety, not wanting to play. 
Daily watching sad looks became haunting to me.
My kids didn't want to be different; they wanted to be free.

Free to stim and free to learn.
Free to ignite curiosity that burns.
To be who they are accepted and loved. 
Precious treasures, gifts from above. 


To be able to learn at their own pace. 
Education is a lifestyle, not a race. 
To embrace uniqueness and set their minds free. 
To explore, learn, and play the way it should be.

We are done with tradition and keeping up with the best. 
My kids aren't made to be still and test, test, test.
I know you may look and feel sorry for me.
But don't, I've done the right thing, I've set my kids free.