Amanda and the Hendersons

I have been on the phone too much with Denver.  I keep calling, only to hear that they have no new information for me yet.  This annoys me, although I know there is nothing I, or they, can do to change it.  Waiting on test results takes time.......it just takes more time than I like.  I don't find myself worrying much about the results....instead more about what the next plan will be. Our whole perspective has been changed.....Its crazy how quickly that can happen. What the doctors and us had thought....wasn't the truth.  Although we were sure he was improving......it was quite the opposite.  I keep staring at the pictures...of his lungs, of his stomach and his colon......I cant stop myself.  Like, maybe if I look long enough the disease will melt away......it wont.  So, what will we do?!!?!?!?  Who knows......even with all my guesses.....I'm not sure.  After church on Sunday, our pastor and his wife prayed with me........

What a week it has been......I have been walking around in a strange haze since last Thursday. Unable to really feel anything...   I have two days in a row of celebration this year.....Both honoring one of the best days in my life.  Becoming a mother, and becoming a wife. Yesterday.....mothers day......was a nice.  My boys spoiled me, I got to spend some time with my mama and sister and I EVEN got a two hour nap......  can't beat it.  Today is mine and Devan's anniversary......seven years of marriage...SEVEN! It feels so good....not only being married for seven years but being married for seven, very hard years.  So many obstacles have shot our way......and with God's help, we have overcome.  We have stayed married through more difficulties than many people divorce for......and THAT is something to celebrate.  I love Devan....not because of butterflies in my stomach (although he still gives me those) I love him because every m...

Ok, so I know......Three blog posts in just a few days is NUTS.....but I'm sorry, writing this stuff out makes me feel a whole lot better about everything.....when I'm stressed, I write...... Being a "hospital mom" has taught me many things......about hospitals, about insomnia, about medicine, about doctors, nurses and so much more. When we are in the hospital (I say "we" because I stay with Parklen, pretty much the whole time) I have a few routines I follow, always......... No matter how hard the night is.....and they are hard, containing continual wake ups for meds and vitals and check ups..... I always set my alarm for very early.  I get up and take a shower and get dressed like I have some place to go, even if that place is NOWHERE.  I do this at home too....dressing up.  It makes me feel so much better than wearing sweats and greasy hair.  I have to wake up early in the hospital so I can get a jump on the day......Doctors start arriving early in...

It has occurred to me, after explaining Parklen's disease to yet another nurse.....that maybe many of you don't actually understand whats going on with my baby...... As I sit here watching him sleep in this hospital room , I thought I should take a few minutes to explain his condition to you......I am always asked, "whats wrong with Parklen?" and Many people have the understanding that he is just sick a lot.  Not the case. Parklen was healthy up until he was six months old......at that point he developed chronic fevers....coming every day, him being my second child, I knew that this wasn't normal and picked up on the fact that "something" was wrong.  He suddenly had golf ball sized lymph nodes in his neck, this led to him being hospitalized in our home town, there, he was misdiagnosed with Kawasaki's Disease and treated.  We were released from the hospital and just a day later Parklen was much worse.  Our pediatrician instantly felt the urgency...

I have attempted to write this post more than a few times......each time ending with tears on my keyboard and puffy eyes. Sometimes I find the words so hard to find.....The words that can capture my feelings just right.  I love being a mother, It is all I ever wanted and more......I just didn't imagine the "kind" of mother I would actually be................... Parklen turned four on Saturday.....this is a fact that I have avoided saying out loud and even thinking.  Its so crazy to me.  Crazy because four is pretty old.....crazy because at one point we didn't know if he would make it to one....crazy because the past four years have been the toughest IN. MY. LIFE.  Parklen's birthday marks a lot of things for me.  Not only do I celebrate the very existence of my tiny miracle......I also reflect on the mountains and valleys that God has brought us through. My emotions have been a roller coaster the past couple of weeks.....and not a good kind of roller co...

This Photo has nothing to do with this post....but I like it.  And, I have been with out a computer until recently so I am WAY behind on photos.......  I had a good weekend........spent a lot of time with some of my best friends.... Got a lot of baby holding in, and learned a lot of new things on Friday, Saturday began with Coffee and some hair chopping with another great pal and ended with a slumber party with some crazy ladies......and today, some Awesome Church followed by a whole lot of NOTHING.......... I am so thankful for the friends I have....old and new.  I am thankful for the ones who listen, to my problems and my worries.....I am thankful for the ones who talk and distract me from my whole life....and I'm thankful for the ones that love me.....NO. MATTER. WHAT. Devan had a pretty good weekend too......His team took first place in the fishing tournament they entered this weekend.... Pretty cool! The next couple of weeks are going to be ...

A few days ago, Parklen and I took a day trip to the Children's hospital.  It was a super long day, over 8 hours of driving and many hours in between of crazy appointments.....none of which went as planned.  It has become clear to me, after over three years of being a "regular" at a hospital....that when a Dr. says "we have a plan" it really just means...."we talked a little about this....were thinking its a possibility, but more than likely we will change our minds with in the next five minutes...." Seriously, the term "practicing" medicine, is a true statement...there is no definite.  This is even more true when your son has a rare disease, of which very little trial and error have been compiled.  So we traveled down....with a plan in mind.... and we left, with a new one.  Neither which are better than the other....just different.   I will tell you all something right now......Parklen is more than loved by his doctors and nurses....