Saturday, December 31, 2011

Autumn Recap

Would you like to know what Autumn has been up to?

Well, Autumn has been up to a lot!

She is now two! 

2

Time truly does fly when your children are growing. 

Autumn has been growing right before our very eyes.  Since starting speech therapy, Autumn has become the little chatterbox.  She is trying to talk in sentences.  She has developed her own language, as well.

And for your viewing pleasure, a look into our sweet Autumn-ese

Cup O' Juice~~She would like her cup
Getcha Getcha~~She is telling you she is done
Down chupa Down~~She wants off the couch
No Goat~~ To get out of trouble ( and I have no idea why)

She has also decided she is a dancing queen.  She spins, she headbangs, she rocks out.  Our girl has got moves!

Her sensory issues still rear their ugly heads from time to time.  She still does not like stuffed animals.  However, she has decided she needs a baby doll.

Three to be exact.  And they all play a different part.  She sleeps with one, plays with one, and has the other one in the toy box in case she can't find baby one or baby two. 

The baby doll she sleeps with now has a name.  She lovingly refers to her baby as Baby Jesus.

I may have the sweetest little girl in the world.

Her big Scottish Rite appointment is approaching in February.  She is starting to complain that her feet hurt (which shouldn't be possible).  Hopefully, we can convince the doctors to run some tests and see if how mulch feeling she does have.

In potty training news:

Well zip.

As in nada.

As in she tells you after she goes to the bathroom, but has yet to actually go in the potty.

So for now, we wait.

I think that about sums up our sweet girl!

Matthew Recap

I thought long and hard about how to start blogging again.  I finally decided the best way to do this is a recap post.  I apologize for the length, but we have been busy little bees.

And first to bat is....

Matthew:

After many fail attempts with anti-seizure medications, we made the decision to begin weaning.  We started with a four-day wean of Keppra.  The weaning process was fairly simple, and the transition was easy.

Clobazam wean was next.  This ten-week wean took its toll.  Every time we would decrease, we would have a few pretty hard seizure days.  Then a miracle happened.  Three days after we stopped Clobazam, Matthew stopped having visible seizures.  Two weeks later, Matthew had one seizure in the evening.  It was a hard one.  He needed Diastat to come out of it.  But just as we began to lose hope, the seizures stopped.  As of today, Matthew has been seizure free for almost three weeks!!

God is faithful.  All. The. Time.

Matthew has had some tummy issues.  Since the end of October, he has lost four pounds.  This week we will have two tests done.  First up, Matthew will have an Upper GI done.  Then we will test for delayed gastric emptying.  Depending on what the results of these tests are, we will be having another surgery. 

With the absensce of his seizures, Matthew has really come out of his shell.  He is smiling and talking more each and every day. 

In April, our little guy turns 3.  Can you believe it?  The day after his birthday, our Matthew will begin a brand new journey. 

SCHOOL

I think that generally covers what Matthew has been up to.

  He continues to amaze us everyday.

Editor's Note:  The day after this was typed, Matthew had several seizures.  We are hoping they are due to his tummy issues.  He has still not had any for two days.  We will take our miracles where we can get them.  

Wednesday, December 28, 2011

Hello There!!

Hello blogger buddies!

Long time, no post, huh?

I would love to be able to tell you that I was busy bringing about world peace or something as equally awesome.  But, alas, I was simply over run. 

A few months ago, I found myself in a rut.  As hard as I tried, I couldn't seem to dig my way out.

But with a renewed spirit, I have decided to start blogging again.

I wish I could promise to catch you up.  However, since it has been so long since I have blogged, I think I will start new.

New Year, New Blog.

I will leave you with a sweet picture of my sweet babies. 

Wednesday, August 3, 2011

P is for...well...Pee!

I try to keep things on this blog family-friendly.


Today, however, this post is all about....

PEE!

We have been anxiously awaiting for today's Urology appointment.  We traveled to Scottish Rite to find out just what was wrong with Autumn's bladder.




The answer....

At this point nothing!

A sonogram on her kidneys was preformed today, and our Urologist felt confident there was nothing going on.

We do have to watch for certain things:

Any sign of a UTI with fever will land us back in with another appointment.
We have to follow up every six months for the time being.
We are not completely out of the woods.


But, good news is good news!

All tuckered out on the way home!
Do you know what that means, blogger friends?

Tomorrow marks a very important day in our home.  We will start potty training!

I know Autumn is still a little young.

But this girl hates...HATES to be wet or dirty!

So today, after the good news we celebrated with a treat for our sweet girl!


YO GABBA GABBA big girl panties!!!

So here we go into the land of potty training toddlers!  I'm not entirely sure we will make it out alive, but I am confident it shall be entertaining and blog worthy!

Tuesday, August 2, 2011

Bliss

Bliss is....














Swimming with friends!

Monday, August 1, 2011

Annual Review

There is one day a year that makes me cringe.

It approaches so stealthily that I sometimes don't see it coming until it is too late.

Last year I cried. 

This year I was prepared to do the same.

What day am I talking about?


Matthew's annual ECI review.

If you are a parent to a special needs child, then you know exactly what I am talking about.  Sitting around your living room, facing off with specialist who are measuring your child up against a standardized test, well....honestly I am easily broken.

So when this year's review rolled around I prepared myself.  I wore waterproof mascara.  I drank an extra cup of coffee that morning.  I thought of every reason Matthew was amazing regardless of what any test stated.  I was dressed in my armor and ready for war.


Only this year, war did not come. 

Don't misunderstand, our ECI therapists are angels.  Each and every one of them have brought joy into our homes each week.  They laugh with us.  They answer every single silly question I ask (and believe me I ask a lot.)  They celebrate with us.  They are simply amazing. 

Its the test I loathe.

Last week, we sat in the living room for the annual review.  Questions were asked.  I answered honestly.  With each answer I felt my shoulders slump a little more.

Is he rolling over?

No...almost though.


How is his vision?


Not great...he tracks some.

I wanted to tell them about his sense of humor.  I wanted to ask where on the test did it talk about his fantastic smile or determined spirit.

But I sat there.  Slumped in my chair.  Waiting for the bad news.


Only this year, bad news did not come!

Quite the contrary actually, Matthew has made progress in each and every area! 

I'm pretty sure I asked her to repeat herself.  Good news doesn't happen a lot around here.  So I wanted to make sure I had not dozed off and was dreaming the entire situation.

But no, he has truly made progress.  We see his progress.  We notice the little things.  When he held a slinky for two minutes without letting it go, we celebrated.  When he made his opinion known during American Idol, we voted for his favorites. 

But, sometimes you worry these things are not seen by the people with the paper and the pens.  Those paper and pens have this power over me.  I want them to see his progress.  I want them to watch what happens when Matthew hears Katy Perry.  I want them to watch him giggle so hard we have to remind him to breathe.  Those are the things that matter. 

And to my amazement, this year they noticed. 

On an overall scale, last year Matthew was at a 0-3 month level.  This year he is closer to a 9-12 month level.

How is that for awesomesauce?!?!

So you know what we did?  We made cupcakes.  We cried.  We called everyone we could think of to tell them the good news.  We did our happy dance.

In this house, all small accomplishments are still accomplishments.  We celebrate everything!

And we are still celebrating!  I am a proud mommy to two beautiful children who continue to amaze us and everyone they meet.

Happy Monday blogger friends!!!

Wednesday, July 27, 2011

Bliss

Bliss is....






A gain in cognitive awareness!

And yes he is pushing the buttons!!!!

Monday, July 25, 2011

Word!

Word(s)

Or lack there of, actually...

Autumn is still not picking up on words as quickly as we would like. 

Don't misunderstand, Autumn communicates well.

She is very vocal about what she wants.  She is quick to make you aware when she is unhappy.

She just simply doesn't use her words.

We started with her speech therapist today, but Autumn was not impressed.  She was not impressed with his toys.  She did not want to play.

And as you know, Autumn generally runs this roost!

In our house, though, we have come to understand Autumn's hidden clues when she is trying to communicate. 

And for your viewing pleasure, today I am sharing our secrets with all of you!!!

Are you excited?

Can you hardly stand it?




I did not get my way!





I know that I am super cute, and now so do you!
 

I got caught doing something I wasn't supposed to.


  
See, I can be girly.
Granted this only lasted a split second.




 Done.  Just done!


Exactly what did you want me to do?




"Cheesey!"
That is what she says when she sees the camera. 




This is her reaction to food she doesn't like.


Mom, no more pictures!


And now, I'm just plain mad.



And this look my friends, is our super sweet Autumn being Autumn!!!

Friday, July 22, 2011

Bucket List



Fought Family Summer Bucket List


When life handed our family some lemons, we made a summer-full batch of lemonade.

Brandon and I sat down and discussed all the things we wanted to do this summer.

Making memories has become such an important part of everyday.  Whether we are hanging around the house in our jammies, or visiting the whales at Sea World, we have made memory making a priority!!

And hanging in our dining room for us to pass by hundreds of times a day is our Fought Family Summer Bucket List.

Tons of fun things fill the poster:

Sea World
Zoo
Aquariam
Sensory Boxes
Fishing
Camping
Bake Treats for Daddy
Crafts
and so so much more!

I am sure this will be a tradition we will carry on. 

Are you making memories this summer?

Tuesday, July 19, 2011

Thursday, July 14, 2011

Miracle for Matthew

A few weeks ago we met with Matthew's new neurologist.


I am impressed!!

Dr. K was caring, thoughtful, and thorough.  The appointment went long but not because we spent any time waiting.  They looked over Matthew time and time again.  Children's Medical in Dallas is an amazing facility.

With that one appointment we discussed med options, set up labs, talked about genetics, and set up an EEG.

That EEG took place two weeks ago.  We arrived at 10:00 am, and were escorted to our home for the next twenty-four hours.


Matthew reacted the way he normally does....like a true rockstar.

He won the nurses over with his long eyelashes and charming grin.



We are pretty experienced in the EEG world.  We pushed our "activity" button often, and seconds later a team of nurses were there to check on us.

When we saw Dr. K the next morning, she explained what she had seen.

Matthew's right side of his brain is worse than his left.  His left has frequent activity as well, but there is no normal brain activity.  In his sleep, Matthew's brain goes a little crazy.

All of this was news we were expecting.



In saying that, it really never gets easier.

Upon leaving the hospital we started Depakote (anti-seizure med) and started weaning Phenobarbital (another anti-seizure med.)


Well folks, let me tell you something......




We have gone six days seizure free!

That's right.....


SEIZURE FREE!!!

And I realize that by saying that we are tempting fate; however, we are taking our miracles where we can get them.


And this is a miracle!!!!!!

He is more alert, vocal, and even getting angry.

Yesterday he had his very first iPad experience.  He loved it so much that when it was taken away, he pursed his lips together, made an angry face, and started to whine!!!

Seriously music to my ears!!!!




Every day is a new day for us.  We know all too well how fast things can change.


But believe me there is a party in our house!!!!

Wednesday, July 13, 2011

Victims

There are moments when I find myself simply speechless.

If you know me, then you know this instance does not happen often.

However, I had a moment this past week where I was simply lost for words.

My children were referred to as victims.


Victims.

Really?!

If you are an avid blog reader of mine or simply someone in our community then you are well aware of the awesomeness that are my children. 

I understand that to the outside, special needs as a whole seem to be a group that is often pitied. 

On the inside of this tight-nit community, it is a completely different story.

They are not victims. 

They are survivors.

Each and every special needs person I have met, virtually or in person, young or old, have fought their own personal war.  They carry their scars with pride.  They envelope a sense of acceptance and hope to those who know them best.

They have survived!

Some of the strongest people I know come in tiny, sometimes broken, packages.

I mean really, have you met my children?!

It hurts my heart that society views special needs in a lacking manner.  We don't lack for anything!  I am blessed each and every day watching my children learn something new.  


So.....

For the record....

Special needs are not weak~~~they have more strength than you may ever understand
Special needs are not lacking~~they possess more spunk and courage than most people I know
Special needs are not quiet~~Sometimes you don't have to say a word to speak volumes
Special needs are not fragile~~God gave them some extra fight
Special needs are not victims~~they are survivors

When you find yourself feeling pity for a person with extra needs, remember this:


Tuesday, July 12, 2011

Bliss

Bliss Is.....







Winning an uphill battle!!!

Monday, July 11, 2011

Petitie Picasso

Recently I decided it was time to introduce paint to my children.

It was, ummmm, interesting!

No, really we had a blast!!

First we painted some pictures for Daddy!  Autumn wasn't super impressed with the texture and feel of painting, but she did a really great job! 

Originally we hadn't painted before because i wasn't entirely sure how to incorporate Matthew into crafts.  I was worried that I would not succeed in showing him "fun with crafts."


Well, I was tired of worrying!!










And it was a success!!



So how do you paint with a child that has little use of his hands?

 You use your feet of course!!

Later we made puffy paint!  If you have patience and an adventurous side, then try puffy paint with you kids!  It is actually a lot of fun!

The recipe is super easy too:

1 tbsp of self rising flour
1 tbsp of salt
Enough water to make a paste
Food coloring


We used cupcake pans to put the different colors.  It worked out really well.

After you are done painting, put your art in the microwave for 5-15 seconds (NO LONGER) and it will puff up!!!

Now our walls are adorned with priceless masterpieces worthy of Picasso.

My lil Petite Picassos are having so much fun with arts are crafts this summer!!