Happiness!

Our boy is sliding back into a regular life. He is tired and needs a couple naps throughout the day, but for the most part he is back to normal and having fun!

Home And Happy

We have been home now for a little over 24 hours. And OH are we a happy happy family!!!! Hayden is a bit tired and can't quite keep up, but he is laughing and playing and talking and eating and giving so much love!!! He's our "one big hug" guy. We are so grateful. SO GRATEFUL! The past few days have been so crazy....so REAL....so terrifying.....yet SO beautiful. I wouldn't wish that experience on anyone, though I am somehow grateful for it. God knows why this whole thing had to happen to us and we have yet to figure it out. I know I reflect on it constantly. My only prayer is that some way....some how.....we will all be better because of it.

Blessings to you and yours. Thank you once again for all the prayers and well wishes.

*pictures will come soon*

Miracle DO Happen

Just 24 hours ago we were faced with the most devestating news a parents could ever receive - aside from death itself . Our Hayden was literally fighting for his life against a disease they saw to be HLH. There were many tests that needed to be done and the results could not be completely confirmed until a bone marrow sample was taken. They couldn't take this right away because Hayden's blood levels were toxically low. But from what they saw under the microscope they assumed it to be HLH and would thus proceed with very agressive treatment (HLH is a severely aggressive disease and could kill him if not treated right away). So that was the plan. Build his blood levels up for a bone marrow test this morning followed by a chemotherapy drug (along with 2 others). They assumed they would find HLH. However, the little fighter's body began producing a good antibody that has not been linked to any HLH cases which made them think that maybe it wasn't HLH and it could be a form of anemia. Again, the bone marrow test would confirm either way. Our hopes were lifted with this news.

Hayden underwent a little procedure this morning and the tests have come back negative for HLH and positive for anemia. PRAISE GOD. He is being transfered (as we speak) out of the PICU and into a regular peds room where they will begin his treatment, monitor his progress, and hopefully discharge him before the end of next week.

I cannot even express my gratitude to God for this ginormous miracle he has granted our family. And I know with every fiber of my being that it is exactly that.......a MIRACLE. Hayden was dying. I held his limp unresponsive body in my arms, I saw his blood levels, and I heard from the doctors what that all could mean. He was fighting. And all we could do was pray and love. I want to thank everyone for all those prayers that stormed the gates of heaven. Because of them, because of the mercy and love of Our Lord, because of our love for Hayden, and because of the fantastic knowledge of several doctors, Hayden is here and safe and alert and WILL GET WELL again.

Thank you. With all of my heart, thank you.

Finding Hope

Dearest Friends (online and off),
I am writing this post from the pediatric ICU of MeritCare Hospital in Fargo, ND. This morning I took Hayden to the clinic because of his lethargia and pastey color. They immediately sent him via ambulance to Fargo where his condition has been diagnosed as HLH. I won't even try to write out what that stands for (right now), but all I know is my little boy is very very sick. VERY SICK. HLH is a very rare blood disease which attacks the red blood cells. It literally causes the white blood cells to "eat or burn" the red ones. His body is fighting against itself.....and losing (right now). We need prayers. Lots of them. He got very sick very fast....within 36 hours. And the doctors are trying very hard to stablize him enough to undergo a form of chemotherapy that will kill off this disease......hopefully before it kills him. Chemo starts tomorrow morning. Please please please storm heaven with prayer.....join us in pleading with God for Hayden's life. The survival rate is only 50/50. It is very fast acting, very fatal, and very rare. And Hayden is very young and not very strong right now. I beg you.....PRAY!

Things Go Wrong For A Reason (sometimes)

I have been looking forward to this upcoming weekend for close to 2 months. In the middle of April when things were pretty nutty for us, my husband promised that once things settled down for a bit that he would take the kids to his parents for a long weekend so I could get some much needed organizing and cleaning done before the summer started. PLUS his parents had been really wanting to spend some quality time with the kids. Perfect. John picked the first weekend in June....Friday morning through Monday morning he would be gone. Once the decision was made for that weekend I felt I could take on the world knowing a whole weekend would me mine and mine alone in the near future. For you moms out there, you know what I'm talking about. Even a few hours of being alone is like gold!
A week ago one of my brothers got a job offer out here and so he is now moving in with us for a little while until he gets his feet on the ground again. We are excited. It will be a fantastic move for him and we are so happy to be able to help him in whatever way we can. BUT that means some major moving and rearranging, packing and shifting to open up our extra bedroom for him. We've been using it as a "hobby room". It's messy. Lots of work needed.
Jump ahead to today. Hayden, our oldest, is sick. He is so sick......to the point to delusions. Puking, so weak he can hardly stand, sleeping all day, only drinking water and gaterade, wimpering and squirming in his sleep. He's miserable. John and I are beside ourselves. We know it will pass. He will get better. But these moments, these long long long moments of helplessness are crippling for us as parents. When all we can do is hold the bucket and rock him. All we can do is love him. I wish that were enough to make all the ickiness go away. My sweet boy, please oh please get better! I want you to have that time with Grampa on the tractor and running with the chickens. I want you to be yourself again.....so kind and intuitive, boyish and fun, smiley and goofy.
John's weekend away with the kids is shot. My weekend of quiet and much needed focus is shot. Why does this seem to always happen? A huge wrench in our wonderful peaceful plans that seem to be just what everyone needs?! Perhaps we need some bonding time as a family. Perhaps John and I need to just be satisfied with chaos right now. Perhaps the kids need us and more of our focused attention more than a weekend with Granny and Gramps. Perhaps we just need to throw our plans to the wayside and let the Good Lord take the lead again. Perhaps.
And so now I am off to the clinic.