Thursday, August 7, 2014

The journey



It seems like I always start a blog post saying "it's been a long time since I posted..." and once again, that's true. It's been an interesting year for Drew and I but we are coming out the other side.

I've thought a lot about writing down our journey, but I always hesitated.  Truth be told, I was just too tired to do anything and I was a little nervous about writing it down.  However, today, I am throwing caution to the wind and writing.

Here it goes...

In February 2014, Drew started complaining of his right leg hurting.  I, of course, totally blew it off, attributing it to growing pains.  However, it just kept getting worse and he would even complain when I tried to touch his leg.  I didn't think growing pains did that.  I took him to his pediatrician and he thought Drew had a virus, due to the fact that his lymph nodes were a little swollen and that was impacting the muscles of his leg. He said Drew should start feeling better soon. The dr. did take a hip & leg x-ray, just to make sure and they looked good.

The VERY NEXT day, when I pick him up from school, he was in a lot of pain and begged me to take him to the dr.  So, I called our pediatrician's after hours clinic and made an appt.  When we went in, they took more x-rays and took blood, which Drew did NOT enjoy.  All of those results came back fine.  That was great, because we were ruling out some truly horrible things like leukemia and I was thrilled with that. On the flip side, my son was hurting and no one could figure out what was going on.  That is stressful, both on the parent and the child.

I wont go through the entire journey, but here are the highlights, after that visit, we
1) went to the children's ER twice!
2) Had an MRI
3) Had a bone scan - which was an all day affair
4) More x-rays
5) More blood work
6) Went to his Neurologist
7) Went to a Orthopedic Dr. - two different ones, BTW
8) Went to a Rheumatologist

During all of this,  Drew wasn't sleeping and nothing was giving him any relief.  To say we were getting frustrated was an understatement.

Through a friend, I meet a woman whose daughter had something that sounded very similar, so I talked with her. Her daughter had a condition called Reflex Neurovascular Dystrophy (RND).  In a nut shell, RND is 

"Reflex sympathetic dystrophy syndrome (RSDS), also known as complex regional pain syndrome, is a rare disorder of the sympathetic nervous system that is characterized by chronic, severe pain. The sympathetic nervous system is that part of the autonomic nervous system that regulates involuntary functions of the body such as increasing heart rate, constricting blood vessels, and increasing blood pressure. Excessive or abnormal responses of portions of the sympathetic nervous system are thought to be responsible for the pain associated with reflex sympathetic dystrophy syndrome. "

During this journey, I asked a couple of the doctors about it and they always said it was a last resort type of diagnosis because it meant Drew had a journey in front of him.  When we were able to get in with the Rheumatologist, he finally confirmed what I had been asking, Drew did have RND.  By this time, due to the circulation being restricted in his leg, his right foot was paler and colder than his left. Not the diagnosis I wanted, but at least we knew something, and as my friend Karen said over and over to me, it could have been worse!

Once we had that diagnosis, the next step was to go and have Drew evaluated by a Physical Therapist at Dell's Children's Medical Center.  We were able to get in and get Drew evaluated and she confirmed what the doctor said. Here comes the fun part, they don't treat RND with medication, they treat it with intense physical and occupational therapy. 

Starting in April, we went to Dell's in Austin twice a week for PT, OT and counseling.  One element of RND is that stress can make it worse and when you're a 9 yr old boy in chronic pain, it's going to cause a tad bit of stress.  Thankfully, we had an amazing team that worked together and was able to create a plan of action to help Drew.  My son is amazing and he worked so hard! PT was hard, he was already hurting and they were asking him to do exercises that hurt, but he did them! Such a trooper!

During all of this, I leaned on my friends and my amazing church family that I'm so incredibly blessed with.  I also leaned very heavily on God and my faith.  Not to say there were times I wasn't stress out and angry, but that's human and I believe God understands those emotions.  

Psalm 46 became one of those Psalms that I would read over and over again.  It spoke to me on many levels.

God is our refuge and strength,
    an ever-present help in trouble.
Therefore we will not fear, though the earth give way
    and the mountains fall into the heart of the sea,
though its waters roar and foam
    and the mountains quake with their surging.[c]
There is a river whose streams make glad the city of God,
    the holy place where the Most High dwells.
God is within her, she will not fall;
    God will help her at break of day.
Nations are in uproar, kingdoms fall;
    he lifts his voice, the earth melts.
The Lord Almighty is with us;
    the God of Jacob is our fortress.
Come and see what the Lord has done,
    the desolations he has brought on the earth.
He makes wars cease
    to the ends of the earth.
He breaks the bow and shatters the spear;
    he burns the shields[d] with fire.
10 He says, “Be still, and know that I am God;
    I will be exalted among the nations,
    I will be exalted in the earth.”
11 The Lord Almighty is with us;
    the God of Jacob is our fortress.

"Therefore we will not fear..." Man, that's a hard one for me.  I have this running joke with myself and it's "If I'm not worried, I'm worried I forgot something." So, I worked on that HARD and I kept saying that to myself over and over! 

Today, I read a blog post about a family whose daughter (I think around 14) died from cancer.  I can't even imagine what they are enduring right now and my heart breaks for them. It reminded me that we never know what's going to happen, and that each and every day is a Blessing and we should celebrate in that! It also reminded me that even though Drew will have RND for the rest of his life and we have to be vigilant about it, he is healthy and back to his crazy and awesome self! 

Life is a crazy journey that no one on earth can predict or even plan for. We just have to take it a day at a time and when that's even too much, let's just worry about the next 5 minutes.



Friday, April 19, 2013

Oh my gosh...It's APRIL!!!!

So, I realized I haven't posted in a REALLY long time, oopss...can I use the excuse that life has just gotten away from me??  Time sure does fly when you have an 8 year that is running you around all the time.  Between school, baseball, homework, etc, you blink and it's been two weeks.  It's crazy!  I have some pics to share and some Drewisms!  It's been way too long!

 Drew and I went skating with his Auntie Karen!  She spoils us rotten.


 So, baseball season was about to start and Drew decided his cleats needed to be cleaned.  Wish I could get him to work that hard on cleaning his room. :-p


The first several games were a little challenging for Drew.  He kept striking out.  However, I was very proud of him and he didn't give up.  He kept working at it.  Finally, he got a base run and then made it home on the next play!  Needless to say, he hasn't stuck out since.  Again, why can't I get him to be that motivated in cleaning his room??


Have I mentioned that his Auntie Karen spoils him (and me?) After one of his games, we had to stop by to take care of the puppies and Drew HAD to have a massage.  He loves that chair in her house. It's hard work being 8!


Drew has always loved Rocky (Auntie Karen's little pup!), but for some reason, he's always been really nervous around him.  I know - it's because Rocky is so big and mean! :-p  Anyway, Drew has finally gotten over that and now he's picking Rocky up and taking him for walks.  He loves taking care of that little boy.

Here are some Drew-isms to brighten your day....

(This is an oldie, but he mentioned it again...)
Drew: Momma, if Jesus rose from the dead, does that mean he's a zombie?
Don't think Fr Trey would appreciate that one! Promise, I'm teaching him that Jesus is NOT a zombie!!

Bed time routine...
Drew: Momma, I need to tell you something really important!
Me: Ok, what...
Drew: Uh....uh.....uh.....uhm...mmm.....
Me: I think you just don't want to go to bed.
Drew: NO, I have something really, really important to tell you...
Me: Ok, what???
Drew: mmmmmm.......................
Me: Drew, you have to go to bed!!
Drew: Oh, I remembered what it was!
Me: Ok, what???
Drew: I love you, you silly momma!
(That boy knows how to play me!)

Drew: Momma, did you know I'm a sexy boy?
Me: (choking on my water) WHAT???
Drew: Yep, it's true! I'm sexy and I know it!
(I am in SO much trouble!!!)

Sorry for the short post, but hey, at least I've posted again!!! 

Hopefully it wont be over 6 months until my next post.

Hugs!
 


Tuesday, September 18, 2012

Long Time No Post...

Hi everyone!  Sorry for the massive delay in posting.  Life is going WAY TOO FAST!!! 

Drew started 2nd grade and so far it's going great! He loves his teacher and he is such a social butterfly, (just like his momma) and he's already made several new friends. 

There is a new Dyslexia teacher at his school and she is amazing.  I think things are going to turn around big time for Drew this year and I'm so excited! 

This summer, we had a very special visitor.  Hanne came to spend 10 days with us and we had a blast.  Hanne is a very dear lady to me and it was great having her here.  She lives in Norway, but was an exchange student here in Georgetown many years ago.  While here, she attended Grace Episcopal Church (where Drew and I go) and I had the honor of being one of her EYC leaders (along with Marty Caskey who ROCKS!).  We hadn't seen Hanne in 5 years, so we had a blast visiting with her.

 Drew and Hanne, her first night here.  

Marty, Hanne and I!  Love these girls!

Drew, Hanne and I at Salt Lick her last night here.

Needless to say, we had a BLAST! Drew told her that she HAD to come back next summer. :-)

In other news, Drew has a "baby brother."  No, I didn't adopt another child. :-)  My friend Mindy had her little boy July 31st and Drew has appointed himself as Kyler's big brother.  It's very cute and Drew talks about him all the time.  Of course, he has a birth baby sister, so Drew thinks Kyler has a big sister in Nevaeh!  It's very cute.  My son has the biggest heart ever and I'm so proud of him!

Drew saw Kyler and on Sunday and I'll have pictures soon!  

More later!!

Hugs,
Paulette



Wednesday, May 16, 2012

1st Grade Program

Hi everyone!  I'm back!! Sorry for the delay in blogging, but life has totally gotten away from me, like it has for so many people.

Drew recently had his 1st Grade program and I LOVED it!!!  It was so much fun watching him and all the other kiddos.  They are so stinkin' cute!!!

I have some pictures I'm sharing.  Sorry that some of them aren't the best, but I have a new iPhone and I'm still learning!


Drew was a policeman in the first skit!  Again, SO CUTE!!!!

In another skit, he was able to play the bells and he was so excited about that.  He talked and talked about that!

I can't believe that next Thursday is his last day in 1st Grade.  Where has the time gone? It seems like yesterday that we were driving to Wyoming to meet him and bring him home.  

Take care!

Monday, April 30, 2012

long time....

Well, I can't believe it's been so long since I've posted!  Sorry about that!  Life is getting away from me WAY TOO FAST!!!!

Drew has been in full swing with baseball, and let me tell you, there are times when it feels like I LIVE at the baseball fields.  He is loving it and he's getting pretty good at it, so I'm very thankful for that.

In addition to baseball, the school year is starting to wind down.  I'm ready for a break and I know Drew is as well. 

I will have some new Drewisms and pictures soon!!!

Take care!