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The Calm After the Storm

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For those of you who have been following our story here or elsewhere, you know we've been on an interesting path in the last few years.  The last few months have been particularly difficult.  I won't bore you with all the details of how we got here.  The short of it is that at almost 10 months of age, our sweet Lockelan was diagnosed with severe hemophilia.  He's one of about 400 babies per year born the in the US with a protein deficiency that prevents his blood from clotting at all.  While this was a death sentence just a few decades ago, the treatments available today will allow him to live a full life.  Granted, it doesn't mean life is easy.  The poor child is constantly bruised from head to toe and even the slightest scratch has to be addressed.  Still, I'm grateful that we can do something.  So far he is receiving on demand treatment.  That means we only have to do something when an incident occurs.  In the near future he'll go on routine treatment, which he'll recieve for the rest of his life.  It will include infusions serveral times per week.  Honestly, I'm a bit nervous because it will be a lot to manage.  The cost is fairly astronimcal too.  But no matter, I've never been more certain that the Lord is guiding our family.

I wish I could say the troubles ended there.  Shortly after his hemo diagnosis he was also diagnosed with a number of life threatening food allergies.  Juggling this has been interesting.  I've had to come up with new rules to ensure the older two don't accidentally expose him to anything.  He was allergic to too many food groups for me to remove all of it from their diets.  Since he is still nursing I also have to follow his diet.  I haven't been the best sport about it.  I tend to use food as a comfort in difficult times.  That has certainly been taken away for now.  The good news is that everyone involved thinks he will outgrown the vast majority of them in time.  It is most likely linked to low filaggrin in the skin which in most cases provides a barrier.  The only reaction we've had so far is skin rashes.  It's fairly uncommon to have no digestive or respiratory issues what so ever.  I'm hopeful that it means we'll get through this stage quickly.

And finally, onto the little miss.  Elora's JIA has continued to get the best of us.  At the end of last year we discovered her jaw was clicking.  A MRI revealed issues in both joints.  The uveitis has continued to attack her eyes as well.  The journey has been more than a little frustrating.  I'm generally as naturally minded as possible.  We went through all the steps that were supposed to cure her... NAET, GAPS, herbs, oils, homeopathy, laser accupuncture, chiro, detoxes and just about every special diet you've heard of.  While this addressed some other issues she was having, the JIA has held on strong.  In her case, she does have an antibody to her own cells.  I'm not sure that one is easily thwarted.

We finally decided to add a biological medication.  While the thought of that initially scared me, the Lord granted me peace over the decision.  We're still very new to her monthly infusions at the hospital.  However, we've already seen a drastic improvement in her eyes.  She recently had joint injections for her jaw as well.  We have good days and bad days.  Overall, I think we are all learning how to live and thrive despite her thorn in the side.

So hat's where we are and where we've been.  I generally try not to delve much into my children's medical issues here, mostly because I have separate blogs for that.  I need a division between these challenges and life for the sake of my sanity.  In this instance, I thought it was important to understand the context of my life.  
I've taken the last few months off of nearly everything so we could adjust.  Yes, it's been a roller coaster.  I've wept.  I've pouted.  I've also found a sense of humor in it.  Maybe I'm even learning to go a bit easier on myself.  Through it all I have seen that we are excatly where God wants us to be.  Now that will be a great post for another day!

We've made some major strides lately.  I hope and pray that this is the beginning of finding our balance as a family again.  I've missed blogging as an outlet so hopefully this is the start of something a bit more consistent.
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