Googling=Bad, Blogging=Good

In the medical world, you'll often hear doctors tell their patients to never use Google.  

It's true, you shouldn't.

And I'm bad, because I did.

Upon hearing Jett's diagnosis over a year ago, I wanted to find out EVERYTHING about Pontocerebellar Hypoplasia.  It wasn't a pretty picture and I remember crying every time I would look it up.  The reports that I read were very straight-forward.  Of course, there isn't a whole lot of information on PCH, but what I read would always state the following:  List of symptoms (too many to list here), treatments (a bucket-load of medication), and the prognosis.

The prognosis.

This got me EVERY.SINGLE.TIME. In fact, I remember Cody walking in on me crying many times as I read the prognosis over and over.  And guess what?  It was only one sentence long.

"Most children with Pontocerebellar Hypoplasia live only into infancy or childhood."

  How could the author of the reports just state this so simply and matter-of-factly? It was like a slap in the face every time I read it and I wanted more details.  How was it going to happen?  How do I know when his time is up?  Why? Why? Why?

So I stopped.

I stopped Googling.  I stopped researching medical records.  I had too many questions and not enough answers.  It was a relief to make this decision.  I felt that I had dug myself into a deep, dark hole and that each time I read a medical report, I would dig myself deeper.

I began to appreciate the here and now.  I began to look at Jett as an individual, not a "case" or a "patient".  I realized that even within the PCH realm, each child is different.  I also began to look up blogs that were informative, positive, and written by real human beings with real human hearts!  No offense, doctors.  

Anyway, one day in my searching, I came across this website called "This Little Miggy".  The author is a mother of two girls, one of which, was born with limb differences.  You can read all about her HERE.  What I really liked about her blog was that each week she highlights a child with special needs.  As I would read through each story, my love grew for these precious children.  Each of their circumstances is so different, yet I felt a connection to them and their parents.  

Last week, I had my chance to write about my sweet, little Jett man.  As I wrote about our situation, I became overwhelmed with gratitude for the precious spirit that I have in my home.  I need to fall back on this more often.  There are times where I get too caught up in the bad moments.  I get caught up with the medical side of things. I get frustrated and angry.  It's not fun for anyone involved.  My goal is to write out my thoughts more often. If I don't do this, I may end up making more crafts (refer to previous post)...and then become a hoarder...and then get kicked out of my house because of it. 

 Let's not go there.  I promise to write out my thoughts more.

If you are interested in reading the post about Jett, go HERE.

OH! I almost forgot, we have new family pictures.  Exciting, right?  Getting family pictures, in itself, is a whole other story that I will have to write about sometime soon.  For now, I'll show you the "ummmm...yeah, this picture turned okay I guess" picture.

Our thoughts exactly

The past week I have ran in to 2 different blogs from special needs parents.  Its amazing to read them because, the thoughts and feelings that they described are completely in line with what we feel and think.  If our parents or close friends were to read these, they would think that we wrote them.  Thank you so much to the authors for putting your feelings to words, and expressing the things that we feel but cannot transfer to paper.

We're not special parents

What I would tell you

Thanks to those that pointed me to these blogs.

Grocery Store Victory

Jett and I reached a huge milestone today at the grocery store.  I can now shop hands-free!  This little dude sat in his carseat the whole time.  He cried at the beginning, threw up twice, and then started looking at all of the lights.

 He may have even started liking his carseat.  

Dare I even say that?? 

Toward the end, he started to fall asleep in it.  You probably don't understand my excitement, but I literally want to shout for joy from the rooftops.  Every little success (no matter how small) deserves to be celebrated and this is definitely one that I will celebrate.

Interaction

After Jett's bath tonight I put him on my bed and lay down next to him.  He was giving me some cute smiles after I would kiss his chin.  It was so nice to see him relaxed and alert. Those two things don't usually coincide...he's either relaxed and ASLEEP or alert and MAD.

After some time doing this, I went to the other side of the bed and called his name to see what he would do.  It took a couple seconds, but he slowly turned his head toward me like, "Yes, mommy?"

Cutest thing ever.  I may have cried.

Sometimes I wonder if he knows who we are, but tonight, he told me himself. 

Surprises from September

I know that I have mentioned how amazing and lucky we are to be where we are, but that feeling keeps getting stronger and stronger with each day of living here in good ol' Omaha.  Although it seems a little crazy that Cody decided to completely change careers and Omaha is definitely not our first choice of "nice" places to live, I am sure that it was meant to be.

It is really hard to be down on your situation or be sad about ANYTHING when you have such great people living near you.  I seriously love our neighbors and have so much fun hanging out with them.  They are very aware of our situation and have gone up and beyond to help us out whenever we need it.  I feel unworthy sometimes to receive such great support!

Case in point…

Meet the Winterholler's.  They are an amazing couple with the cutest twins you've ever seen.  Anyway, they showed up one night and surprised us with a painting for Jett.  Are you kidding me?!  Besides this being the coolest painting ever, it also matches Jett's room perfectly.  We now proudly display it right above his crib.  

Yup…cutest twins ever.

THANKS you guys!

Another awesome surprise this month came from Cody's cousins.  They are moving cross country from California to Virginia.  Even though it was a short visit, we were SO happy to see them.  Jett was being exceptionally good and let Dayna and Erin hold him for a few minutes.  They got a rare glimpse of the comfortable, peaceful Jett!

The next surprise really isn't a surprise at all…but Jett is cute.

This is "happy" Jett before his 48-hour EEG that occurred at the beginning of the month.  Jett's neurologists wanted to know once and for all if he is experiencing seizures.  It was all done in the comfort of our own home, which was nice.  The not-so-nice thing is that Jett had to have 23 leads stuck to his head with super glue and then had to stay in front of a video camera for 48 hours.  Ugh. 

 It was horrible!!  

I did not play by the rules.  I snuck him outside twice and actually ended the study at 26 hours.  I felt that Jett had exhibited all of his "seizure-like" behavior…and he was soooo uncomfortable.  Poor baby. It took me about two hours to take the leads off of his head, but once I finished, we rushed outside to enjoy the wind in our face and the sunshine overhead.  Jett even gave me some smiles.

We finally received the results this week.  Jett is NOT having seizures!!  However, his brain activity is very abnormal.  Even while Jett sleeps, his brain is incorrectly misfiring all over the place. 

 The constant activity in his brain is to blame for Jett's dystonia and chorea (stiffness/rigidity and involuntary movements).  The doctors didn't have to change any medication, however, which was nice for a change.  

The last surprise of the month came courtesy of a friendly goat at the Omaha Zoo.  First off, if you know me well, you are probably very aware that I am obsessed with goats.  I really would like to have one as a pet someday.  Now, I'm not so sure!  

The goat tried to EAT Jett's feeding tube.

Umm…not okay, goat.

Jett gave the goat a swift kick in retaliation.  Besides that, the zoo was so much fun!  The weather was beautiful and Cody got to come with.  It is rare to have time with Cody due to his crazy dental school schedule. 

And the best surprise of all??  Uploading the pictures from my camera and realizing that Jett is SMILING in this pic!!  This is a very rare occurrence people.  I hope you are as excited as I am.