Tuesday, March 25, 2014

I've Never Liked Rollercoasters

I am not a fan of rollercoasters.  I can still hear the click of the track as the Texas Cyclone crept up the hill.  The feeling you get when you go straight down is not something I care to ever experience again.  So you will never see me in line at the Tower of Terror :)  Going fast is fine but ups and downs are definitely not my favorites.

The past year has been that way….filled with ups and downs.  My "Christian" has been through so much...our entire family has.  His needle fear has been debilitating and we have finally been making some progress in helping him conquer his fears.

But tonight was bad.  He completely freaked out and it took all three of us to get him accessed.

The frustrating part is that he had a super day at therapy and physical therapy and we even received the news that the Xolair has been approved after battling with the insurance for over two months!

We end the day on a downer but I know how important it is to keep hope alive throughout our journey.

Even when the day ends yucky it doesn't mean tomorrow will be.

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Friday, March 21, 2014

Twenty Days

I never dreamed we would make 20 days of school in a row.

But there is something else that is absolutely amazing. "Christian" has been struggling with his fear of needles for quite some time. It was to the point where my husband and I had to take him in to the HTC once a week to be accessed because he was fighting so violently. It was a physical and emotional nightmare for all of us. It is to the point where my son has been diagnosed with Post Traumatic Stress Disorder.

My sweet boy has been working with a play therapist and a physical therapist (swimming pool) and in order for him to get the full advantage of the pool he needs to be de-accessed and accessed more frequently during the week.

I think it has been the motivation he has needed to really start working through his fear. He absolutely loves being in the water. So far we have had three infusions where he has been still and not needed to be held down! Yes, another thing I didn't dream would ever happen.

Most people have a crisis for a short amount of time and things move on. When you are in the middle of a "season" of crisis living with a chronic condition it's hard to see the other side.

"Will it ever get better? Will we ever move forward?"

Yes, it will. It may not always be the outcome you want, but times will get better. Those times may only be moments, but you hold on to what you can.

You have to hold on to hope like your life depends on it.

Sometimes it's all you have.


Sunday, March 16, 2014

And Another Week Passed.....

Fifteen days of school in a row!  Well, of course that was almost too much to believe.  Friday night, as we entered the auditorium to watch my oldest son perform the lead role in "Shrek", my "Christian's" knee started up.  I immediately took him home (with my husband recording the show....at least I did see him perform Thursday night and Saturday night) and started aggressively treating. 

Q3 is not for sissies.  It's rough even when you have a spouse/partner able to help.  We were pretty wiped out this weekend but it looks like we managed to get everything under control without having to go to the hospital!  Whoo Hoo!  That's even better than 15 days of school in a row :)

This is definitely a big one for us.  It seems as if over the past year whenever a bleed starts in Christian's knee we end up in the hospital for pain management.  And when infusing less than Q4 is needed we normally go in for help.  We know when to raise the white flag and the doctor's are great about encouraging us to do what is best.

As of now we will be getting him off to school tomorrow and hopefully complete day 16.

I'll take the little things as they come. 

Saturday, March 8, 2014

10 Days!

Yesterday was by far the best afternoon I have had in months.  I had a productive day at work...that is always a positive.  But the best part of Friday afternoon was that my "Christian" completed 10 days of school in a row!  10 Days!!  The most he had gone in a row before a bleed took over had been 6.  I don't think he has completed 10 days in a row this entire school year.

But it gets better.

Christian held still while my husband accessed his port.  That is HUGE!

My sweet boy suffers from PTSD and accessing his port has been a nightmare for a couple of years.  Now that he is going to pool therapy for his knee we are having to de access more frequently and yesterday was a great day.

I would say that I shouldn't write about our good fortune because I am going to "jinx" our luck.

But I am a woman of faith and I don't believe in luck.
No, Christian is not walking yet and his knee is a mess.  He is allergic to Factor VIII and we cannot get the Xolair approved (yet).  There are stumbling blocks and who knows what else in the way as we deal with his inhibitor but what I do know is that I have to hold on to hope.
If you are out there struggling with a bleeding disorder or chronic condition, I know that there are times when you absolutely cannot breathe, but hang on tight and hold on to hope, because there is a light at the end of the tunnel.

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