Wednesday, January 25, 2012

Hindsight

Have you ever been able to look back at the events of your life and truly see the pattern God laid out for you?

As I chatted with Christy on the phone Monday night, that is exactly what happened. 

God allowed me to see just how he began preparing my heart for this special life and my special children many years ago.

I won't bore you with all the sappy details.  I will simply start early in 2009.

Brandon and I had decided to adopt.  We knew this was the right direction.  We were also foster parents.  Every day brought the same anticipation of THE PHONE CALL

And with each passing day, the phone did not ring.  We were presented several adoption opportunities.  Nothing seemed to pan out for us.  We very close to bringing home a baby in March of 2009.  We had painted the nursery.  We had picked out a name.  We were waiting for the travel call.


2009 left us waiting for our phones to ring a lot.  Thank goodness for cellphones!


The events that led to that adoption plan being disrupted are not important.  What is important is that on April 10, 2009 we were notified that the sweet baby we were waiting for would not be coming home to us.  He did, however, go to a beautiful home with a very loving family.

 Our hearts broke.  We were numb.  We were destined to be childless. 

And then, many more failed attempts at adoption.  Many more days waiting for the phone to ring.

When we were in the process of becoming foster parents, we were asked what situations we would consider.  Its truly unbelievable how time has changed us.

Our first home study read "no wheelchairs" "no visually impaired children."  We were both uncertain we were prepared for a child with medical needs.  We were sure we would not be able to parent a child that was special.

And God laughed.

We did eventually have the amazing opportunity to open our homes to two sweet foster babies.  Mr. J and Miss A stayed with us for ten months.  They will always be loved.

In September we were notified of a child in need of a home.  We read his profile.  We made phone calls.  We were told that this baby could in fact be our baby.  The only obstacle in our way was us.  We prayed.  We sought out support. 

We were actually told to not proceed with this adoption.  People were unsure how having a child with this extensive of medical needs would affect our lives. 

And sadly, this got to me.  I actually decided against the adoption.  I told Brandon I couldn't do it.  I was scared.  I was sure I would fail at loving this baby and giving him the proper medical treatment he needed.  Brandon and I sat down on a Saturday night.  We discussed how having a special needs baby would impact our lives.  We decided the best course of action would be to go to church the next morning and rally together in prayer.  We prayed and prayed.

The next day we went to church. 

And once again God prepared my heart.  He opened my eyes.  He changed me. 
And we left church knowing that in a few short days our son would be home.

Our son, who was born the same day our first adoption attempt failed.

There were moments all throughout my life when God was preparing my heart for this special life. 

A moment in camp when I had questions regarding worship and people with special needs.  A moment one summer when a silly joke that the joke-teller did not mean to be hurtful tore open my heart and caused me to lose friends.


A moment when I held my child for the first time and did not see his medical needs but his beautiful brown eyes and his contagious smile....a smile we were told we would never see.




Matthew actually helped us adopt Autumn, but sadly that is another post.

As Christy and I discussed the rare moments in our lives that were evident of God's touch, I realized I am in one of those rare moments now. 

In this moment I know God is preparing us for something new.  And that my friends is all in God's hands.


I will however, tell you a little secret.  Brandon and I are hoping to adopt again by the end of the year!

Hindsight is 20/20....

...and truly beautiful!

Tuesday, January 24, 2012

Blessed

I am very blessed.

God blessed Brandon and I with two beautiful children, who I happen to think are very awesome.
I was able to marry my best friend.  He makes me laugh every single day.
My family is supportive and encouraging.

That's why it is so hard for me to talk about one aspect of living in this special world that hurts my heart.

When we began our special journey I read a lot.  One of the common themes I discovered lingered on losing friends when your kids have medical needs.

I honestly thought that was bogus!

I was wrong.

It is not that the friends I had before no longer want to be in our lives.  It is not that they don't like us.  It is not even that we don't have anything in common.

People just change.





I actually think we are the ones that changed.  Friday nights are no longer spontaneous.  A friendly get together with friends now involves suction machines, feeding pumps, emergency medications, extra clothes, and of course timing the next poopisode.

We are hard to sit for dinner in a crowded restaurant due to two wheelchairs. 

We are not exactly desirable friend applicants.

I don't blame anyone.  I don't generally get my feelings hurt.

I just seem to get rather lonely from time to time. 

Please don't misunderstand:

I have AMAZING friends. 

What people failed to mention, when they spoke of losing friends, was the beauty of the true friendships that happen in this special world.  The friends you make are precious.

The people who listen to your ranting phone calls about doctor appointments, therapies, and insurance are the ones you want to keep.

The people who see your children for the beauty that God created and not the diagnosis that is present are irreplaceable. 

And, again, I am very blessed.

There are just some days when the invitation for a play date doesn't come or the coffee is drunk solely by me, that I have a tinge of sadness. 

And it is in that moment I make the decision to do something about it.  I drink the coffee alone.  I mean, really, if you have seen me in the afternoon wired on a pot of coffee you know this is true.  I have play dates of my own.  I blog to you, my blogger friends.

And I remember that God puts the people in my life that I need. 

And once again, I remember,

I am truly blessed. 

Monday, January 23, 2012

Love is in the Air

Its Wedding Week blogger friends!!

I am the proud sister to five brothers.  My oldest little brother, Blake, is marrying his best friend this Saturday!




And I am so very proud.

Blake found his soul mate.  He found his partner. 

I knew she was a keeper when she didn't run away after she met our family.

:::::WINK::::::::

Blake is marrying Jamie.  We are truly lucky to welcome her into our family.

She is kind, loving, beautiful, and a true friend.

And in just a few short days, I will cry tears of joy as they say "I do."



Happy Monday blogger buddies!!

What's happening in your world this week?

Thursday, January 19, 2012

Special Needs Mom

You know you are a special needs mom when......


At the dinner table, your daughter decides to lick ranch dressing off the table. 

Instead of stopping her, because well its unsanitary....

You admire the trunk muscles she is using.

And you let her lick the table clean.

Wednesday, January 18, 2012

iPad Apps

Several months ago, we were blessed by our local Texas Commission for the Blind with a iPad for Matthew.





When it was first being discussed we honestly weren't sure if Matthew would respond.  During an annual Vision evaluation, and iPad was brought out. 

Matthew went nuts!!  He reached for the piano that was being shown.  He giggled.  He cooed!

I was sold.

I immediately began researching apps that would work for him and Autumn.  I read blogs and asked around.

Since receiving the iPad, we have become quite dependent upon it.  Autumn has gained many vocabulary skills and can now identify a goat, donkey, bird, cat, dog, and plane. 

I think having an overbearing mommy, like me, helps with vocabulary, but I do think the iPad has encouraged speech.

If you are considering an iPad for your child, it is most definitely an investment worth your time.

Here are some of our favorite apps:

For Matthew

Baby Piano Lite (Free)
         This app uses bright colors.  You can either play as a traditional piano or with animal sounds.  This is the first app we saw Matthew respond to.

Look Baby (Free)
           This app offers four different games.  You can tickle a teddy bear.  You can pop bubbles.  You can watch as a butterfly changes colors.  You can even make the shapes jump around.  It is easy to maneuver and works with the slightest touch.

I <3 Fireworks
             This app is one of my favorites.  All that is needed is a simple touch and fireworks start to shoot off.  You can record your fireworks and play them to music.  This app is used quite often.

Fart Piano
             Yes, really!  There isn't much more information needed.  But trust me, lots of giggles happen!

I Hear Ewe
            This app was suggested by our vision therapist.  He used it during a session with Matthew, and Matthew seemed to really respond.  With this app there are three pages loaded with animals and transportation.  Clicking on a square makes the iPad come to life with the sound of the picture.  So far we know that Matthew likes elephants, helicopters, and fish!

Story Mouse
           This app is free for the first book, but each additional book is paid for.  This app gives you the option to read the book or have it read to you.

Twinkle Star
           This app also reads the nursery rhyme.  We are only using the lite version.  I believe with the full version there are more options. 

Oh The Thinks
             This is a favorite Dr. Suess book brought to life by the touch of the iPad.  It can be read to you, read it yourself, or auto play.  If you choose "read to me" you are required to tap the picture.

DoodleKids
            This app if a lot like the fireworks app.  All it takes is a slight touch and the screen comes alive.  Matthew likes to paint with this app.  Each time you pick up your finger the shape that you are painting changes.  It really is a neat app.

Jingle (Christmas)
            This app responds to the Jingle book and dog sold around Christmas. 

Rattle (Christmas)
           This app has the sun moving around the screen with presents and such falling.  You can shake or touch.

For Autumn

Itsy Bitsy (Lite version)
       This is a household favorite.  The classic nursery rhyme comes to life.  There are also little things you can do such as collect eggs, put hats on the spider, or (Autumn's favorite) splash water from the drain.

Bus (Lite version)
      The Wheels on the Bus is a lot of fun.  You have to use motor skills to open the bus doors, or help the wipers go side to side.

Elmo ABCs (Lite version)
         With the lite version of this, you can really on play with letters A, B, and C.  But Autumn has learned the alphabet with the help of Elmo.

Animal Phone
         Autumn can have her very own conversation with Graham the Gorilla. 

Sound Touch Lite
          This is the app that has allowed Autumn to learn about animals.  You touch a picture, and the corresponding animal will make its sound.  It is a lot like " I Hear Ewe" but the pictures are of real animals, cars, etc not cartoon pictures.

Peekaboo
         This is a funny app!  You play peek a boo with the monkey.  He will spit out you, kiss you, and hide from you.  You can even make him dance.

Kids Music
         With this app, there are many many different options to play.  We are still learning what we can do as Autumn finds one she likes and then sticks with it.

For Mommy

Moms with Apps
     This free app organizes apps into different categories that make it easy to see what might work for you.  You can even set up a wishlist.

AllRecipes
         Really, need I say more. 

All in all, if you are looking into getting an iPad, believe me when I say it is totally worth it.

We also have the first season of Spongebob (yeah, I know) that we use for Matthew when he is doing tummy time.  I think it might be time to add some new cartoons, but we don't fix what isn't broken around here.  :)

Tuesday, January 17, 2012

You Inspire Me

I have a ritual every single day.

In the rare moments of the day where the children are quiet and content, I open up my laptop and allow you to inspire me.

Some of you inspire me with your advocacy.  Some of you inspire me with your wit.  Some of you inspire me to create beautiful crafts with my lovelies.  Some of you make me laugh so hard, the tears roll down my cheeks!

Every single day, you open up your world, your home, and your heart and let me in.

Thank you.

Thank you to Junior's Amazing Journey for showing me how awesome having a special guy like Matthew (and Junior) can be.  Your ability to make the world adaptable for your special man is so amazing. 

Heidi also writes here at Adaptations 4 Kidz.  Thank you for showing moms like me how easy it is to to make unbelievable products for our special kiddos.

Thank you to Kidz for giving me a place where I can meet and be encouraged by other special moms.  Kidz has something new everyday.  From inspiring quotes to special songs, Kidz lightens my heart every morning.

Thank you to Tara for opening up your life with the world.  Thank you for sharing sweet stories about the gorgeous Chloe.  Thank you for showing me what a privilege it is to be a mom to a special child. 

Thank you to Jocalyn for sharing Kendall's story.  I am truly honored to have actually met you.  Kendall is as cute in person as she is in her sweet pictures.  Thank you for being real, for expressing the truth behind this chaotic life.  Your posts about Kendall preparing for school are so helpful, as we are a few months away from sending Matthew.

Thank you to Ellen for providing such great information regarding special needs.  Max is such a doll, and purple looks fantastic on him.  Thank you for constantly providing great information on all things special.

Thank you to Kirsten for being a real life friend!  I hope you know what an inspiration you are to other moms. 

Thank you Danielle for the open approach you take to blogging.  I enjoy reading about Trevy's experience.  I am totally a stalker of the Trevy trays!!  It is truly moms like you that make me thankful to be put in the special needs community. 

Thank you Bree for the beauty you see in the world.  I am totally amazed at the awesomeness you bring to the world.  From the picnics to the unbirthdays, I truly want to be you when I grow up!

Thank you to Stark Raving Mad Mommy for making me laugh.  The humor you find in the everyday truly gets me through my morning.  Most of the time, I spit coffee at my computer screen from laughing so hard. 

Thank you to Rants From Mommyland for the constant hilarities that ensue from your blog!  Sometimes, with your blog, I laugh so hard the tears run down my leg!!  I mean, really, if you don't believe me, check it out!!


There are many more blogs I would love to share with you.  However, for their privacy, I am only sharing the blogs that are public and gave their consent. 

Thank you for making my day, blogger friends.  Thank you for sharing your lives with me every morning.  Thank you for allowing me to not feel alone in this world of special circumstances.

Monday, January 16, 2012

Water Fun

Over this past summer I wanted to focus on some of Autumn's sensory issues.

I read many books.  I chatted with many moms.  I looked up many ideas.

Then I got to work. 

One of Autumn's favorite sensory activities is Autumn's Water Box.

It is really simple.  And even if your child doesn't have a Sensory Processing Disorder, activities like the water box are good for any child. 


I started with a $1.00 clear tote from Walmart.  I then gathered little odds and ends from Walmart and the local dollar stores. 

Some of the items in the box were:

Straws
Sponges - cut into the shape of a fish
Beach toys
Foam stickers - they stick to the side of the tote when wet
Cups






Autumn really enjoyed it!




Matthew got in on the water fun too!!!




Of course, this is how Autumn prefers to play with the water box.


All in all, this water box cost under $5.00 to make contains hours of fun!!

Friday, January 13, 2012

Hard Life

Happy Friday blogger buddies.

Sadly, I don't have a post ready for today.

So I was thinking I would leave you all with an inspirational song.

We all could use some inspiration, right?

I first heard the song here.

Kidz

If you are a special momma and you don't know about Kidz, trust me, it is

AMAZING!

Have a great weekend everyone!

Thursday, January 12, 2012

Let's Take A Stroll

On March 31, 2012 at the Dallas Zoo, we will be taking a stroll.

Stroll for Epilepsy 2012 is official on its way.

Last year we had a blast.  We raised money.  We met our goal.  We felt honored that many of you supported us in spirit, in person, or by donation.



This year we are hoping to up the ante, so to speak.  We increased our donation goal.  We are praying for even more walkers.

To be honest, a little over two years ago, I did not understand that much about Epilepsy.  It wasn't until I had to watch my son have hundreds of seizures a day, that I began to understand the severity of this catastrophic disease.  Matthew underwent numerous EEGs.  We tried many different medications.  We failed with the Ketogenic diet.  It has truly been a rollercoaster ride. 

At the moment, Matthew's seizure monster is gone.  We know it can make an entrance at any time.  We know we will probably always fight this disease.

That is why fundraisers like the Stroll for Epilepsy are so important.  Every donation helps children like Matthew.  The money raised goes to research as well as helps send children to camp.

I mean really, do you need more reasons to want to help?

So here is the info. 

NoLimitz Stroll for Epilepsy

Join our team.  Donate a  little cash.  Help us raise awareness!!!

Help us make this year the best yet!!!

Come on, I know you can do it!

Wednesday, January 11, 2012

The Many Faces of Autumn

For your viewing pleasure:


All about the many faces of Autumn!
Clearly, she did not get her way!
Don't be fooled, this face is very mischievous.

This face happened right after she was told she could not have a 3rd helping of Ketchup.

Our pretty girl and her pretty "cheese" face!

Pretty pretty, trying to be like mommy.

My favorite face, you see this proud face after she has doing something and then clapped for herself


And those, my blogger friends, are the current faces of Autumn!!!  Never a dull moment in this house!

Saturday, January 7, 2012

The Skinny on the GJ Tube

So what is a GJ tube?

GJ-tubes (Transgastric feeding tubes) are similar to G-tubes in that they provide a way to deliver nutrition to a person who is unable to ingest their daily nutritional requirements orally. This type of feeding tube uses the same stoma created by the G-tube if the patient has already been using a feeding tube. No further surgical procedures are needed to switch to this type of tube. (That's the good news!) They are called GJ-tubes because there are two separate routes included inside the feeding tube. One route is delivered into the stomach. The other route is delivered into the small intestines (also known as the jejunum, hence the "J").

Matthew required a GJ tube for many reasons.  The two main reasons are: Severe Reflux and Delayed Gastric Emptying.  

Delayed Gastric Emptying, also known as Gastroparesis, means that food remains in the stomach for longer than it needs too. 

The J part of the GJ tube goes into the jejunum, which is located in the small intestines.  Because the feeding tube of the J is much longer than the G, it has to be threaded into the intestines in the x ray department. 

Here is a picture of Matthew's G Tube.


The port that you see goes directly into his stomach.


This is a side view of the GJ tube.  What you are seeing here is the G port.  This port still feeds directly into the stomach.  At this point, we use this port for Matthew's tummy medications as well as any medications that start in pill form and need to be crushed.


This is the front view of the GJ tube.  This view is of the actual J part of the tube.  The extension you see is actually feeding him in the picture.  The formula is going directly into his intestines.  We use this port for all nutrients as well as all other medications.

When Matthew was switched to a GJ tube, he was also switched to a new formula.  We are now using Peptamen Junior.  Essentially, the formula is more broken down.  Also, when using a GJ tube, bolus feeds are out of the question.  The feedings need to be over an extended period of time. 

We are already seeing the benefits of the GJ tube.  Matthew is able to tolerate his 22 hour feedings.  He is smiling, laughing, cooing, and even holding his head up better.

It is truly amazing what can happen to you when your tummy doesn't hurt all the time. 


And this final pictures truly speaks for itself!!  A much happier Matthew!!!

Tummy Trouble



Matthew has been having some tummy trouble recently. 

These problems came to head this past week, landing us in the hospital. 

It all started several months ago.  Matthew has always had some tummy issues.  They go hand-in-hand with low mobility and some of his other diagnoses.  This time, however, we needed help.
In the end of October, Matthew weighed almost thirty pounds!  He was growing at a good rate, and our dietician actually suggested slowing things down a bit.  By the end of December, Matthew weighed a little over twenty-five pounds.
October 2011 A healthy 30 lbs
December 2011

Yep, our little guy was sick.  His ribs were protruding.  He threw up all day.  He was miserable, uncomfortable, and in pain. 

My heart ached.  Our pediatrician requested an Upper GI and a Delayed Gastric Emptying test. 

We headed to Dallas Children's on January 3rd for the the Upper GI with small bowel. 

We immediately knew he had reflux.  It was very evident.  We started chatting up the tech in Radiology, and were discussing what we thought was going to happen next. 

Sometimes, God provides you with the people you need.  Sometimes, his miracles are so big. 

The tech in Radiology proved God's mercy to us.  She, without hesitation, put a gj tube back for Matthew in case we ended up needing it.  She even notified her boss and put his name on it.

After the Upper GI, we traveled over to the GI's office.  We begged to speak with someone.

Several hours later, and many tears shed in front of complete strangers, we got to speak with a nurse.  She informed us on what the plan was, and told us that our GI would see us Friday after our other test.

By Thursday, we were on the phone with the GI again.  She asked us to do a bowel "clean out" to insure Matthew was not just constipated.

We obliged.
He was not constipated.

So off we traveled again.  Friday morning found us having our Delayed Gastric Emptying test done.  By lunch we were in our GI's office.

She was alarmed at Matthew's weight loss.  We were being admitted.

We barely had time to get acquainted with our nurses before we were whisked to Radiology.  We were assured Matthew would get a gj tube on Monday.  But God has his hand over our sweet boy.  The Radiologist from Tuesday recognized our name.  She called our floor and told them she could squeeze us in.

And Matthew became the proud owner of a new gj tube. 


By Saturday morning, Matthew was rocking his gj tube and tolerating the new formula.

We were switched from Pediasure 1.5 with fiber to Peptamin Junior 1.5.

The doctors were truly impressed.

And what began as a sure four to five day hospital stay lasted a mere twenty-four hours.  

We headed home!!

Matthew is a rockstar.

We are not out of the woods yet.  The next few months will be much stress over calorie intake, Matthew's output, and weight.

But in the end, our guy will be healthy.