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.

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