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.

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.

 

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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. 

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.

Head in the Sand

"If I don't talk about it surely it will go away!"

"If still have checks in my checkbook, so surely there must still be money in my account!" :)

"If I don't answer the phone I won't hear the bad news on the other end."

I admit that I like to put my head in the sand. It's easier to let someone else figure out the problem. Well, the days of living with my head in the sand are over.

I used to think I had good insurance. I've never had insurance worries like so many other people with bleeding disorders. And when it came to advocacy (like going to D.C. advocacy) I never had a level of comfort with this kind of work.

Yes, I admit, my head has been in the sand. And now it can't be.

I thought I was about to have a heart attack last week during one of my numerous phone calls to my insurance company. I have been trying for weeks to get approvals for Xolair (an allergy injection) for my "Christian." The allergist we are working with thinks using this drug may help my son with his allergy to factor eight.

The insurance keeps denying the drug despite conversations with our hematologist. Their reasoning is "Xolair is not an indicated drug for hemophilia."

They are not listening.

And the part that absolutely blows me away is that the drug is approximately $800. $800 in the care of son is pennies in comparision to the millions of dollars we use in factor replacement! Yes, millions and he is eight years old. They don't stop to think that this $800 drug may help my son's body accept factor eight and use less factor in the long run.

The insurance had the nerve to ask, "Have you paid for it out of pocket to see if it works?" At that moment it felt like one of the veins in my head exploded.

I have to get out of my box and do what so many others have been doing for years...get out and educate others and make change happen, in a different way.

I am only a mom with two sons that have hemophilia. Only. Yeah, right. I should know better than to say that .

If you know a parent of a child with a chronic illness you know that there is not much that they cannot do :)

I am not going anywhere and I will do whatever it takes to make sure that my children get the treatment they need to live empowered, fulfilled lives.

No more sand for me.

 

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