Future and the past....

    Our whirlwind visit to the National Institutes of Health was almost an overload of information and ideas. However I feel good about it. They did
quite a few tests and started genome sequencing.  He may eventually be enrolled in another study in conjunction with the fever syndrome study as well as the other children. 

    I feel as if we are at least on the road to a more definitive answer. With not just Cody but the rest of the kiddos too. It also makes me feel more confident as to sending him away to school. So the plan is for him to
return before he leaves for school in the August and he has started the 
SubQ Actemra injections.

    School is gearing down we should be finished by the end of May. And I
have some decisions to make about next year for the younger ones and myself. We had another OT evaluation for Lucas which basically confirmed
his previous evaluation but brought up more questions then answers. I 
can not help but wonder how much of it is neurological inflammation? Not
sure what direction to go from here quite honestly.

   Today was one of those I just want to cry days. Some of them were
good tears and some tears of frustration.  Cody got the go ahead from
his doctors to participate in a summer missions trip.  Any time he gets to
participate in a normal activity... you know an activity that someone else
wouldn't think twice about doing it's a reason to rejoice.

    The frustration comes because now there is a whole new level possibly
to Luke's issues which is another battle to fight.  And financially we 
are already pushed beyond our limits.  Vehicle, house, and medical issues
are making it hard to keep my head above the water. And yet I am well
aware that I am blessed beyond measure.

    I still have my beautiful children with me. I am able to see their faces and hear their glorious laughter. And although they test my limits daily, I 
am truly blessed.  

    While away at the NIH Mike and I celebrated 22 years of marriage. This year it passed quietly without much fanfare. However our lives together is a testament to God's grace and provision.  At times I have lately I 
have cried out to God asking how much we are supposed to bear... but we are not alone. Last year on the 2nd of May I sat alone in a waiting room while Mike had his cancer surgery.  This year has truly been a faith building, learning to trust year.

Forging ahead

 

  I have thought more than once this past week~ I am not good at this motherhood job.  It was just a normal week not anymore crazy or hectic than any other.

   Of course it was an infusion week and truthfully infusions weeks (or shot
days for that matter) always give me pause. For many years now I made
doctor appointments, picked medications up, fought insurance companies for treatments, prepared and given shots, communicated with doctors, stood by while tests are performed and infusions administered. That part of my job has shifted for at least two of the four kiddos ~ now we have entered into teaching how to be a self advocate. Honestly that is exhausting... 

    However, it is where we are at and like it or not I am in the process of
teaching two young adults to self advocate. Rachel has been doing fairly
well although after being with a pediatric specialist we are finding the adult
specialists are not nearly as helpful. So with Cody's more complex issues
it is a bit unnerving to all of a sudden give him the wheel. 

    It is also highly unnerving that he is beginning his foray into college. Yet this fall the plan is for him to move into a college two hours from home. He
is even pursuing an oversees mission trip this summer. So my job of late
is to be the mean mom. You know, hard-nosed and hard lined, pushing
him to do the outside of his comfort zone things. The accusation, "Are you using applied behavior analysis on me?" has been uttered more than once. :)

    This coming week we head to the National Institutes of Health. This time he signed all the scary consent forms....here we are forging ahead to a new chapter in life.