Thursday, March 31, 2011

Easier Said Than Done

Tuesday we traveled to our all day long Scottish Rite appointment for Autumn.

All. Day. Long.

We sat in one room for several hours while different doctors, nursers, therapists, and dieticians paraded in and out giving us their opinions on all things Autumn.

It was exhausting.

Per the usual, I went prepared with a list of questions and concerns I wanted to discuss.  Autumn has been exhibiting several behaviors that worry me.  She is having near consistent nightmares.  She will be sound asleep and scream and thrash.  This sort of scary thing happens three to five nights a week.  Aside from that, Autumn does not eat much.  I have been assured that she will "eat when she is hungry," however, this phase seems to not be passing and has lasted four months thus far.  She also has a tiny attention span and gets very frustrated very quickly.

Now, to most parents this might not seem "worry worthy."  Given Autumn's drug exposure at birth, we prefer to be cautious and proactive.  We are aware of how very lucky we are that she is as healthy as she is.  Drug exposure can present itself in many different stages in life, and we just want to make sure we are not seeing complications that can be treated.

On this particular day the doctors were being very vague.  They gave us several options for the nightmares, one being night time seizures. 

No. Thank. You!

We were instructed to do a ten day sleep log without the help of her Melatonin.  Oh what fun!!  We were also instructed to fill out several questionnaires regarding her behaviors.  We left Scottish Rite feeling more confused and frustrated than we had felt walking in. 

All the way home I replayed the conversations in my head.  They were implying something I could not pinpoint.  I went over each and every answer to every question.  The doctors have never been this vague before.

What did they think was going on?

Once home, I immediately retrieved the questionnaires and started to fill them out.  That's when it hit me like a ton of bricks. 


They think she is Autistic!

Don't misunderstand, this diagnosis does not scare me.  I just do not think it is appropriate for Autumn.  I think she exhibits many qualities of having Sensory Processing Disorders, which thanks to our wonderful Occupational Therapist we are being evaluated for as of now.  I just think they are taking some of her behaviors out of the context related to her medical issues.  In regards to her eating, I am more concerned it is sensory or even surgery related.  Our sweet girl had three surgeries involving repairing and removing parts of her intestines in the first four months of her life. 

This is not something they are concerned with!!

All in all, I am sure we will have a new "developmental" diagnosis within the next two weeks. 

In all honesty, I'm not entirely sure how I feel about this.

Is it too early to diagnosis?
Are we being proactive by taking precautionary measures?

It also brings up mixed emotions I haven't felt in a while.  When you have special needs children, you mourn the loss of something.  With Autumn, it has always been physical.  She won't walk.  Pure and simple. I have mourned the loss of her dancing at her prom or walking conventionally down the aisle.  I have dealt with how to explain his disAbilities to her friends at school and to herself  Cognitive impairment is new.  New is scary. 

Even as I type this, my sweet girl is playing with her toys and laughing at "Yo Gabba Gabba."  It breaks my heart to know she may have to go through more than her fair share. 

I have no doubt she will deal with whatever is thrown at her with spunk, grace, and humor.  I have no doubt she will take her weaknesses and turn them into unbelievable strengths. 

This is purely a "Mommy" issue. 

I am having to grieve and mourn again.  It saddens me and puts an ache in my heart.  I can tell newly diagnosed parents all about grieving.  I can paint a beautiful picture full of hope and laughter.  I can share inspirational stories and impress the importance of support and encouragement. 

It just goes to show .......   Easier Said Than Done!

So please stay tuned to find out the chilling conclusion to the conundrum that is Autumn.

Same bat time...Same bat channel!

In the meantime......how cute is she??

Tuesday, March 29, 2011

Bliss

Bliss is.....








Knowing that boys will always just be boys!!!


Yes folks, that is in fact Matthew laughing while his daddy makes farting noises.

Is it sad that I feel a little uncomfortable posting "farting?"

Monday, March 28, 2011

The Color Purple

If you have found yourself redirected here in search of Oprah, I am sad to say you have been guided to the wrong place.

However, if you see her, please tell her I say hello and am in need of a new car!


This Saturday was National Purple Day.

What in the world is Purple Day?

Well, it just so happens to be a wonderful day full of celebrating and raising awareness for those heroes fighting the beast we know as Epilepsy.

This was our first experience with Purple Day.  We rushed to put something together.  Though it was not all fireworks, we had a good turnout.

Purple cupcakes....



Purple juice....

Purple wristbands....

Purple ribbons....

Purple painted t-shirts....


And a very symbolic release of purple balloons.


Our first celebration of Purple Day rocked!!!


Matthew even got to have some serious discussions with his new buddy, Layne!


Thank you to all who helped us celebrate Purple Day this year. 








Maybe next year Oprah will show up!!

Thursday, March 24, 2011

Don't Take It For Granted

Friendship is one of those rare aspects of life that are often taken for granted. 

I am proud to say I depend on the few true friends I have.  They are my support.  My rock.  My back board.

Thinking about the quality of life when friends are a part of it has a tendency to make me sad.

Will Matthew have that special friend to share things with?

Will he ever be able to share his deepest darkest secrets with anyone other than his ever listening Mommy?

Don't get me wrong~~

I enjoy sharing secrets with my little man. 

He tells me all sorts of fun things.

He shares how he prefers Lady Gaga over Kidz Bop.

He tells me "Yo Gabba Gabba" drives him crazy too.

He whispers about his favorite parts of his day.

I enjoy being his special friend.

However, I hope he never misses out on the small things in life we don't realize are important.

Will he have anyone in the community that understands him the way we do?

Don't get me wrong...

Matthew has a HUGE fan base.

His family, his girlfriend nurse Josie, his therapists, and a handful of doctors are quite smitten with him.

What about someone to share his toys with?  What about sleepovers?  Will he receive invitations to birthday parties?

Pity party anyone????

Honestly though, I do worry.

I want my children to be accepted in every aspect of life.

I know that alone is a dream that will have to fought for to be accomplished.

I will never feel ashamed or incomplete if we are forever Matthew's special friends.  I will be completely honored if he chooses to share his sweet special kisses and amazing secrets with just us.

I just hope that we will never take for granted one of life's little secrets known as friendship.


"I get by with a little help from my friends."
- John Lennon

Wednesday, March 23, 2011

Over the Hump

Advocacy...


A word to strike fear in every special needs mom's heart.


Are we doing enough?

Did we gather enough donations?

Did we spread the word to as many people as we could?

That word alone keeps me from sleeping many nights.


I think as a mother to two wonderfully special children, the urge to "change the world" pulls strong.


It beckons me in my sleep.  It haunts my dreams.


It drives my crazy. 


Luckily, my new best friend, Kindle, has opened up more books regarding advocating for my children.


Unluckily, it leaves me feeling even more overwhelmed.


Our motto has always been to educate your own community.  Start small.  Spread the word. 


It may sound easy cheesey, but then life happens.


As my children grow, I want them to be proud and strong.  I want them to see the Ability in their disAbility.  Its a lesson that is sometimes hard to teach even in our own home.


I find myself telling Autumn there is no way she can do something.  Autumn keeps finding herself proving Mommy wrong.


Take today for instance:


Autumn has mastered her wheelchair.  Next week we will order her very own and with any luck it will be just amazing!!!
  (We are keeping the colors secret for now)

She can roll all through the living room and dining room.  She has maneuvered herself into the hallway to go into her bedroom.  The kitchen, however, presents a problem.  The entryway into the kitchen has a "door seal" on it.  Forgive myfeminine ways when speaking about anything involving construction.  She has gotten so frustrated because she can't seem to get over that hump.


Today as I was washing dishes, she proceeded to try again.  I continued to tell her she would not be able to get over the hump.  She continued to scream and throw a fit.  I decided to pick my battles on this one and continue to let her try. 


As I was walking into the living room I heard her start rolling pretty fast.  I turned around to see my sweet girly girl do a wheelie in order to get over the hump and into the kitchen!! 


My first reaction~~~Wooohoooo!!!!  Look what she can do!!!
My second reaction~~~~Oh no, now she can get into the kitchen!


After clapping for herself ever-so-proudly she rolled right into the laundry room and started removing the clothes from the hamper and throwing them on the floor.


Mommy's little helper.




In that moment, though, I realized that sometimes I am too quick to give up and not get over the "hump."  I get discouraged and outraged.  I preach on my soap box from my very own porch. 

And then my voice goes quiet.  I am terrified of ridicule or scrutiny. 

My children deserve so much better.

So here, in the middle of the night, by the light of my laptop I am choosing to spread the word. 

"Never be afraid to raise your voice for honesty and truth and compassion against injustice and lying and greed. If people all over the world...would do this, it would change the earth. "
William Faulkner




Tuesday, March 22, 2011

Survival Guide for Stressful Nights

Here it is guys...

What you have all been waiting for....

Anyone still with me?


My survival guide for a stressful night:


A great book

~Right now I am reading "Breakthrough Parenting for Special Needs" on the Kindle




Chocolate decadence

~~oh yeah that is a healthy slice of Turtle Cheesecake





A fabulous pedicure


~~Girly and ready for Spring





And a great friend to listen to you vent


~~Love you Janie!!


Now, a good glass of wine goes a long way, but not tonight. 




How do you de-stress?

Monday, March 21, 2011

Schiz-a-what?

One of the hardest diagnoses to understand and explain is Schizencephaly.

Matthew has Bilateral open-lipped Schizencephaly.

Yeah, I know....you are asking "What?"

Well Schizencephaly (meaning split-brain) is an extremely rare developmental birth defect characterized by abnormal clefts in the cerebral hemispheres of the brain.

Rare...

We think Matthew is pretty rare!  He is unlike any other little boy on the planet!

Most diagnosed with Schizencephaly expereince developmental delays, language delays, and seizures.  It has also been related to blindness. 

Needless to say it is a big word with little common knowledge known to how it relates to Matthew.

We cannot isolate any one of Matthew's indiviual needs to any one diagnosis.  Matthew is constantly keeping us on our toes with his varying degrees on medcial need.

Schizencephaly occurs during the first to fifth month of gestation. 

Some affected have normal intelligence.  This is another spectrum disorder with varying degrees of severity.

There are few resources availbe regarding Schizencephaly.  Some of the most influential information I have received have been from parents with "Schiz" kids. 

As always, we do not allow Matthew's diangoses dictate his life.  He is our little man, first and foremost.  He is strong and beautiful.  He is sweet and tenderhearted.  He loves the sound of Cookie Monster and the music of The Beatles.

For more information on Schizencephaly try here or here.

Sunday, March 20, 2011

Invisibility Power

Matthew has a new superpower.

Aside from being irresistibly cute and cuddly, he is now mastering the power of invisibility illness.

Let me explain...

About a week ago, our sweet boy started becoming very irritable.  The normal calm child of ours was replaced with this boy who wanted nothing but to cry uncontrollably and be snuggled at all times.  Don't get me wrong, I enjoy all things involving snuggling my children; however, Matthew is not generally a snuggler.  He prefers his own personal space, much like his mother. 

So we went through the list...

Teething....possible but does not generally cause this amount of pain
Toxicity from meds....nothing has been changed recently enough to produce this result
Tummy trouble....always but our GI does not seem to see things our way
Fever...nope not even a little bit

By Wednesday, Matthew was crying to the point that sitting on the porch in the wind for a few hours only calmed him for a minute or so. 

It was awful.

Matthew is not a fan of sleeping through the night, but by Friday night sleep had not come much at all.  He was getting roughly six hours in an entire day. 

Friday night he screamed and cried until finally passing out with the help of his sleep medicine.

Saturday resulted in holding him All. Day. Long.

Saturday night I was at wit's end and caledl the on call pediatrician.  After much deliberation, we decided to take a journey this morning to the hospital for blood work.

Matthew is not a fan of having blood taken either.  Luckily, these women  were well trained and very accommodating to our little guy. 

The doctor also called for an urine analysis.  The hospital did not have the right equipment to cath Matthew.  This is a blessing as well as a curse.  I hate my children being cathed.  Its painful to watch and heart wrenching to not be able to help. So, this resulted in a pee "catch all." 

Don't you just love my medical terminology? 

Have you ever had to urinate for a doctor and not need to?  Knowing you need to produce something for someone is almost begging your body to not do the job at hand.  Well, try explaining this to a two year old.

Hours....

Three to be exact is how long it took to get just enough for an analysis.

So across the street to the doctor's office we went waiting on results.

And...

They....

All....

Came...

Back...

Fine!

Are you kidding me?

So, now I am trying very hard to not go completely insane.  My mommy gut is telling me there is something going on; however, by all accounts there is nothing showing up.

That leaves an invisible illness....

I have several theories that I just need to convince one of our ever expanding specialist of.

Ahh...the life of a special needs mom....

So as I type this our sweet little guy is still crying.

For no visible reason!!

Of all the superpowers to possess this is not one I am a huge fan of.

Just saying....

Saturday, March 19, 2011

525,600 minutes

I cannot believe it has been a year already.  Wow!  Time sure does fly.

A year ago today we walked hand in hand into a courtroom in Dallas and finalized Matthew's adoption.

What a glorious day!!

We did not need a piece of paper to know he is our son, but the formality of it all is truly breathtaking. 


Our handsome little man laid in our arms in his four-piece suit while a judge officially changed his name and forever changed our lives.

Our hearts have celebrated this day every day since.  Adoption is an amazing experience.  Its an emotional roller coaster.  It is defiantly not for the faint of heart. 

After a mini celebration in the hall of the courtroom, we traveled a small distance to experience another first.

It was that day that we also met our daughter for the first time.

What a glorious day!


Walking into the house that held both of our hearts at one time was magnificent.  Tiny and small and full of spunk our little Autumn laid in the arms of one of her NICU nurses.  She smiled at us and our hearts were full. 


It is amazing how one day can hold such precious memories.  It is amazing how one house can hold so much love.  It is amazing that here we are a year later with two angels since directly to us from above.

  

And here we are....525,600 minutes later!

Friday, March 18, 2011

Unnerving...

Nerves....


Tomorrow is a big huge day for us.

By the time you read this we will be on the road for Brandon's biopsy.

Biopsy....

Is that a word you should have to talk about at our age?

To be completely honest I am more scared than I think I have ever been.  Brandon is my husband.  My best friend.  An amazing father.  A fighter.

Fighter...

We have become accustomed to fighting lately.  We are fighting for family's health.  We are fighting for medical decisions.  We are always fighting insurance.  This is a new fight.  This fight is a scary fight with the outcome being completely and 100% out of my control.

Walking into the office tomorrow will surely change us forever.  Regardless of the results we will overcome!  Even as I type those words with shaking hands I am terrified.  Facing this kind of reality is unnerving. 

Please lift up a small prayer for my sweet, amazing husband and I tomorrow. 

Tuesday, March 15, 2011

Mommy Knows Best

I have always believed in the mythical monster that is "mommy intuition."


When we brought Matthew home, I was unsure how it related to adoptive moms. 


Didn't we miss nine full months of bonding?  Matthew was six months old when he came home.  We missed fifteen full months of bonding.


I followed my gut on many occasions.


I crossed my fingers....
and my toes.....
Wished on a lucky star...
And prayed for the best!

Today's story, however, is a little different.


Matthew has been on Phenobabital for almost eighteen months now.  Phenobarb is an anti-seizure medication.  Originally we saw fewer seizures. 

That was short lived.


The seizure monster visited our home twenty times a day.  Each day was worse than the one before. 


Each visit to our neurologist brought the same questions:


"Can we try a different medication?"  ~~~No
"Can we wean Phenobarb?"   ~~~~No


We were defeated.


Sometimes, circumstances have a funny way of turning out.


I went to refill Matthew's Phenobarb prescription.  It would be ready on Saturday. 


Well folks, I forgot!!!!


Yes, that's right.  I cried and cried.  I have never forgotten a medication. 


I called all around.  No one had the right dosage.  I called the neurologist. 


Luckily, we don't throw out medications often.  We tried Klonipin a few months back and saw not-so-nice results.  We held onto it in case of emergencies.


The Neuro agreed we could take the Klonipin until we refilled the Phenobarb.  That would be a total of three days.


By Monday morning, Matthew had been without Phenobarb for a full 72 hours.  His therapist commented on how alert he was.  He rolled from his side to his back.  He rolled from his side to his belly.  These were milestones we had not seen since starting the Ketogenic Diet.


After stating my case and being repreminaded for it, our neuro finally agreed we could stay on the Klonipin for now.  We will be starting Clonzapam this week in the last stages of quitting the Ketogenic Diet


~~~at least for now but that is a whole other post~~~~


On Saturday Matthew was laying on the couch.  This is his usual nap time spot.  He has been very alert and only sleeping a few minutes at a time.  This has resulted in full nights of sleep!  Yippeee!!!! 


While my mother-in-law, my grandmother-in-law, my brother-in-law, Brandon, and I all caught up Matthew was thinking up an amazing plan.


One....
Two....
Three...


And it was just like that.  He rolled from his belly, off the couch, and onto the floor.  He was super fast!


After inspecting for injuries, I cried.  Bawled is probably more appropriate. 


Then I celebrated! 


Rolling was something we were assured would never happen.


Its amazing how one medication can fog up your life.  My mommy intuition knew all along. 
It is irrelevant how much time was missed in the beginning.  He was created for us and us for him.

I love that sweet boy of mine!



Monday, March 14, 2011

And So It Begins....

Our new reality...

Hello blogger friends! Miss me?

Its seems like it has been forever since I have sat in front of my computer and let my fingers do the typing, but life happened.  It continued to happen for a while. 

It amazes me how one little word can change your world. 

Cancer.....

Brandon's father was recently diagnosed.  To be completely accurate the diagnosis is:

High grade large B cell Stage 4 Non-Hodgkin's Lymphoma.


Say that three times fast.

Believe me, I am not trying to make light of the subject.  It completely took over our lives for the past six weeks.  Learning new medical definitions, cleaning his house, organizing his finances.

This week, however, a new reality sets in.  Rodney will finally leave the hospital.  He will come home to a clean and sterile environment.  Up until this moment he has been in a controlled environment with caregivers and doctors.  Now it falls to us.

We become generally the only caregiver for all things physical, emotional, medical, and spiritual.
And let me just tell you, it scares me!

So dear blogger friends, please know I have missed you so. 

I will try to be more present and blog more frequently.

In the meantime, please remember us in your daily prayers!